Friday, December 26, 2008

Boxing Day

I had another good visit with Mom today. She was sleeping when I arrived but woke up and wanted to get up for lunch. Even though she only ate a few bites for lunch, she did at least eat something. It was good to see her, and during the day is her best time. She had on her new shirt that I gave her for Christmas.

It is very warm here, in the 40s. My ice candles are melting. They looked very nice on Christmas Eve when it was very cold. If they aren't gone by tomorrow I will take a picture.

This Christmas has been better than I thought it would be. Maybe it's because I lowered my expectations. I'm glad that I spent it with Mom. I've spent every Christmas of my life with her and it just seemed right to spend this one with her as well.

I bought myself a Christmas gift today; Guitar Hero on Tour for my Nintendo DS. So far I really am not very good at it. But I'll keep trying as it is very relaxing to play.

I hope that everyone had a lovely holiday.

Thursday, December 25, 2008

Merry Christmas!

Merry Christmas everyone! Mom and I had a wonderful time together today. Our housekeeper stopped by yesterday and left a lovely porcelain doll for Mom. Mom loves it. She also received a lovely fleece jacket from my sister, a beautiful bouquet of flowers from my brother and a fleece shirt and slipper socks from me. She ate all of her lunch including her ice cream today.

Yesterday when I visited she was sound asleep and the kitty who lives there was pushing on her door trying to get in her room. Once in there she was meowing and brushing against everything. It was quite charming to see.

I've been following one of our family traditions; watching The Christmas Story on TV. I have taken tomorrow as a vacation day and hope to spend time with Mom and maybe do a little shopping. We'll see.

Monday, December 22, 2008

Mom Is Doing OK

Tonight it took two hours to get home. I haven't been to see Mom since Saturday (I took this picture) and I feel guilty about that. I spoke to the hospice nurse today. Mom was agitated today and did not eat more than a few bites of food. I hate that she is going through this. I wish I could do more to comfort her.

Today I am at peace with our decision to move Mom to assisted living. Tomorrow it may be different but today I know that she would not be getting the best care possible, let alone the fact that I couldn't do it, at home.

It is so cold here now and we are supposed to get even more snow overnight. All of this snow and cold is getting really old.

Saturday, December 20, 2008

I just watched 'Mamma Mia' with my neighbor Mary. What a wonderful movie for lifting one's spirits. I definitely have needed that lately. I recommend it if you like musicals and chick movies (and music by ABBA). Mom loves ABBA so that was the one hard thing about watching this movie. She would enjoy it.
We, of course, are in the midst of a winter snowstorm today. Still, I was able to drive the 3 miles to visit Mom this morning. Mom was the same, sleeping with not so much wailing today. I fed her nearly all of her lunch and her dessert. She was directing me with what she wanted to eat and when she wanted to eat it.

I pasted pictures of her kitty near her bed and added the collage that I had made to that same wall. I hope that in some way these comfort her.

Driving was treacherous. I hit an icy patch on the highway and thought for sure I was going to rear end the car in front of me. The anti lock brakes kicked in and since I wasn't going very fast, I averted a crash. We are definitely having a white Christmas here.

Monday, December 15, 2008

Alzheimer's Wailing

About six weeks ago Mom started this new thing: she will wail pitifully. Tonight at CB's Christmas party she started her wailing about halfway through the program. I'm not quite sure what it means, so I googled it and found some interesting articles including this. I think tonight she may have been trying to tell us she was ready for bed and not really in the mood for a Christmas party with music. She was awake when I arrived at dinner time but quickly fell to sleep. Luckily she had eaten most of her meal and drank most of her juice. I feel very low about this. I was sort of looking forward to spending some time with her, but I have to remember, this isn't about me, and she can't help it. It would break her heart to know that I was sad. So I'll try to be happy, because that is what she would want for me.

It's bitterly cold here; minus 10 was what the temperature said on my car tonight as I drove home from CB. This morning I could tell it was cold before I even got out of bed. Both cats were sleeping right against me and I couldn't even move!

Thursday, December 11, 2008

Ambiguous Loss

Caring for someone with Alzheimer's is like descending a staircase. At each step you encounter a new crisis, learn to manage it and move on to the next crisis. Each new crisis rips away more of the sufferer's independence and dignity. Mom's and my experience with Alzheimer's is no different. The first crisis occurred when Mom got lost driving to my home. She drove right past the exit and ended up miles away. Thank God she had enough of her faculties left and she pulled over at a fire station and called me. I knew exactly how long that drive should take Mom so when she hadn't shown up, I lost it. When we finally were reunited we hugged each other so hard and cried. I was so scared that I would never see her again. Several years earlier a woman with Alzheimer's had left her home for her cabin and had never been seen again. That story kept running through my mind. The next crisis for us was when she moved in with me and I realized that her dementia was more advanced than any of us had thought. We've met each crisis head on, dealt with it and moved on to the next one. The most recent crisis occurred when Mom moved into CB and soon afterward was assessed for hospice. As Alzheimer's caregivers, we experience something called ambiguous loss. As author Pauline Boss states in her book Ambiguous Loss "This roller coaster of absence and presence is a very stressful kind of loss— ambiguous loss. Unlike death, there is no closure, no official validation, and sometimes little community or religious support. You feel you are left to cope on your own; even the strongest caregivers feel anxious and depressed. The challenge is to learn strategies to cope with this ambiguity that is so much a part of memory loss." I have been reading her book and have found it helpful in my struggle with my feelings about the challenges we all face with this diagnosis. Each day is different; in the beginning, there are more good days than bad days. Then the tide turns and the bad days begin to outnumber the good. Our loved one slowly slips away from us day by day, week by week and moment by moment. It's heart wrenching to live this way as we try to keep up with the pain and emotions. And we watch our loved ones, in their confusion, try to understand what is happening. Our hearts break and we are thrust into a new phase of our life. In my case I was forced to grow up and become the caregiver for Mom, the woman who had always been my rock, my best friend and most of all my mom.

Wednesday, December 10, 2008

Today the hospice nurse called with an update. Mom had been ill with the stomach bug yesterday afternoon. Today when the RN stopped by to see Mom she was seated in her chair but was very upset. She asked Mom if Mom was in pain and Mom replied that she was so they gave her a small dose of morphine and put her down for a nap. She was still napping when I arrived. I kissed her forehead and she woke up and I asked her how she was doing. She was alert and fairly coherent. Tonight was the family support group meeting so I went to that. I find those meetings very helpful. It's good to discuss with others. At the end of the meeting we learned that C, who lived on Mom's side of the building, passed away on Monday. This was a shocker to me since C was always fairly with-it and also very cranky. This news made me sad even though in a way it is a blessing because she will no longer suffer from this awful disease. God bless C and her loved ones.

Sunday, December 7, 2008

Candle Success!!

The ice candle is perfect! It is supposed to freeze with a hollow spot in the center and mine did. The walls around the center are about 3 inches thick. I'm quite pleased with it, so much so that I'm going to make several more (since the weather seems to be cooperating and staying well below 32 degrees) so that I can line my front sidewalk with them on Christmas Eve.

I still haven't gotten the urge to put up the Christmas tree. Today I took a nap with both kitties sprawled on me. That was fun. And of course it was snowing this morning. It's very Christmas-y around here in Minnesota. I have been shopping on line and have all of my shopping completed except for something for brother and his wife. And maybe something more for Mom.

Saturday, December 6, 2008

Mom and I had a lovely, long visit today. I stayed with her through lunch (she ate all of it!) and then we held hands and just enjoyed our time together. Mom still gets slightly agitated but for the most part she was pretty good.

I'm going to try my second attempt at making an ice candle tonight. I have a bucket of water outside and I hope it will freeze leaving space in the middle for a candle. Cross your fingers.

Friday, December 5, 2008


It started snowing tonight on the drive home from work. Luckily the roads weren't slippery. Tomorrow I plan to spend some time with Mom. I hope she is having a good day, but even if she isn't, it will still be good to spend time with her. I wish I could bring her home to help me decorate our Christmas tree. CB is decorated for Christmas. They have trees and lights throughout the building. I hope Mom enjoys that.

Thursday, December 4, 2008

Deeply Disturbing

This story is appalling beyond belief. I've been haunted by this since it broke in late summer and it made me very upset and even more reluctant to place Mom. I would find it hard to control my rage around these individuals. They should be forced to register as sex offenders. The fact that they believed this treatment 'made their jobs more fun' angers me to no end.

Wednesday, December 3, 2008

My heart is heavy tonight. I spoke with the hospice social worker and asked about Mom's deep sleep and disinterest in eating. She said that in patients with dementia this sometimes signifies the brain and the body shutting down. This is very hard for me to hear. But as my sister would say, it is what it is. Mom doesn't want to live this way, I know that for a fact.

She was sleeping tonight when I stopped by. Sleeping deeply, but she awoke when I whispered in her ear. I asked her if she wanted to get up and eat some dinner and she said yes and then she said no and fell back to sleep. She roused a few times and even spoke my name. I turned on 'Everybody Loves Raymond' but even that didn't rouse her. I stayed for a while and she continued to sleep. I feel so sad.

Tuesday, December 2, 2008

Ta Da!

Here they are, the very first pair of mittens that I have ever knitted. They look like mittens, and not some misshapen monstrosities. I'm quite pleased! and surprised by that. These were fun to make and of course the yarn is from Annie! They turned out pretty good. The color is lovely and will match my snow jacket quite nicely. And I finished them just in time for the cold snap we are experiencing.

Sleeping Beauty

Last night I visited Mom after work. Evenings are not her best time of the day. She had just gotten up from a nap and was sitting at the dining room table snoozing. Only this was a deep sleep. I couldn't rouse her. She opened her eyes when I first got there but then she continued to sleep right through the meal. One of the nurses on staff stopped over and tried to rouse her by saying her name. She awoke, saying 'What?' then fell back to sleep. While there I noticed one of the residents was scratching at a rash on her arm so I mentioned it to the caregivers and the nurse took a look at it. I hope I'm not labeled a butt-in-ski for this but I know that the caregivers are usually pretty busy with so many residents to keep an eye on. I still am not aware of the events of Mom's day; when she gets up, how well she eats, who comes to visit. Except for hospice visits. They keep a log of visits and each visitor leaves a note their visit with Mom. My mom's sister left me a message telling me that she had a wonderful conversation with Mom on Monday. Of course, conversations with Mom are usually indiscernable but she tries so hard to talk and make us understand what she is trying to say. It's so hard to know that she can't really express her needs and wishes, but I think that Hospice helps because she gets extra attention. I have been trying to read as much as I can about how to understand and communicate with someone who has Alzheimer's. But it's still hard. Mom is a trooper though and a fighter. I wish I was able to stop by during the lunch hour but my job is not close to home. That is a disappointment for me because I know that Mom is usually more alert at that time of day. I guess it is what it is.

Sunday, November 30, 2008

Snow....

Mom was back to being agitated last night. I think it's sundowning. She was upset and crying off and on. I couldn't figure out what was upsetting her. I tried to get her to color but she was not very interested. She tried it, but she was too agitated. At dinner time she slept awaking just in time for the meal to be over for everyone else. I fed her most of her dinner and she ate it readily.

There was about a quarter of an inch of snow on the ground this morning when I awoke. The sound of the snowplow and shovelers foreshadowed this. It's rather cold too. I suppose it's time.

On Friday night I watched the movie "Baby Mama". It was a nice diversion for me as I found it quite funny. It took my mind off of Mom for a while.

Tomorrow it's back to the grindstone at work. I've enjoyed my time off by reading, knitting, watching movies and straightening up around the house. I've finished my mittens Annie! And they look great. I'll take a picture as soon as I'm done blocking them. I've also spent some quality time with Mom.

Friday, November 28, 2008

Black Friday


Traditionally today is the day most people decorate for Christmas. I'm not very motivated at all to do so. I hung my wreath on the front door. I even ventured out of the house to Target today, Black Friday! to pick up a prescription. Target was not very busy; I'm hoping the bulk of the shoppers were there earlier in the day.

I've included a picture of Mom from yesterday. She is relaxing in her wheelchair before lunch. She really was in good spirits yesterday and that gives me something to be thankful for.

Thursday, November 27, 2008

Mom and I had a wonderful Thanksgiving together. She was happy and she fed herself her entire Thanksgiving meal. This is amazing. She even ate her pie. We held hands and I told her "I love you" and she told me she loves me back. That alone made my day. She was laughing and sassy in a good way. I am so grateful for today.

Happy Thanksgiving

Happy Thanksgiving my friends. I hope that you are all blessed and have much to be thankful for this Thanksgiving. And I hope that you are surrounded by those you love.

I will be spending Thanksgiving with Mom and later with good friends.I am so thankful for good friends and family.

Monday, November 24, 2008

I'm Wearing Purple Before I'm Old

I visited with Mom yesterday for nearly 3 hours. She was eating a slice of lemon meringue pie when I arrived. I was told that she ate a majority of her lunch. She was nervous off and on all afternoon. She would look at me and tear up and reach out her arms for a hug. We shared lots of hugs yesterday. She started crying when I got up to leave. Everyone tells me, "I went through that when I would drop my kid off at daycare" but leaving your kid at daycare is a growth experience for you and your kid. Leaving Mom at CB is the opposite of that. It's growing down. It's a sad experience for me because Mom isn't 'growing up or learning new skills'. I keep thinking that she feels abandoned and I hope that feeling doesn't persist for her. I hope that it's gone very soon after I walk out the door and that she only feels that when she sees me and it reminds her of something she no longer has. God I hate this disease so much. It's the worst to watch someone you love slip slowly away from you. Even so, I'm grateful for the precious time that I can still spend with her. And I know that no matter what the future may hold, at that moment in time she's my Mom and we love each other.

Saturday, November 22, 2008

Party at CB

On Thursday CB had their 10th anniversary party. There was still quite a crowd when I got there around 5PM. The entertainment included a woman (whose mother lives at CB) who has sung on Broadway, and one of Mom's caregivers, Fartun, who it turns out is a pop star in Somalia. I've attached her video from You Tube. Mom was sleeping when I arrived. She ate some of her dinner and participated in some of the activities according to the staff. She seemed to be well and looked good.

I finished one of my mittens. For a first time mitten knitter, it looks pretty good. I've started on the second one and am halfway through the cuff.

I woke up to a light dusting of snow this morning but it's actually warmer today then it was yesterday morning.

Wednesday, November 19, 2008

I've visited Mom after work for the last two days. Yesterday she ate a few bites of dinner then fell fast asleep. Tonight she did the same but woke up near the end of the meal. Her pills are given to her crushed up in yogurt. She ate this mixture readily so I asked for a dish of yogurt. Mom ate the entire dish of yogurt plus a dish of ice cream. Now I wonder if anything would have been offered had I not been there to ask? Before leaving I gave her a hand massage in front of the fire where it was nice and warm. She seemed to enjoy that while she dozed. I'm more than half inclined to find out what it would cost to have round the clock care at home. Would it be less expensive? However, I couldn't afford an RN or an LPN at home so I guess CB is the best place for her, as long as I make frequent visits to keep an eye on them. After all, Mom is the most precious person to me.

Sunday, November 16, 2008

Like Wrestling with a Porcupine*

I thought I would show you my progress with knitting my mittens. The yarn and the title above are from Annie. Yarn from Annie is wonderful to work with. This particular colorway is called "Hollyhock". It's gorgeous. This is the first time that I have knitted mittens. I have only had to rip out and start over once. I'm pretty proud of that. Knitting is one of those gifts that I received from Mom. She was quite a knitter, making hats, mittens, afghans, scarves and sweaters for us when we were kids. I still have the scarf that she knit for me when I was kid as well as several hats, mittens and sweaters. She is an amazing crafter, artist and mom. I wish she was able to help me with my knitting now.

I went to see Mom today. She was napping while waiting for lunch. She perked up when she saw me. She also ate some of her lunch and all of her protein shake. After lunch we visited for a while and watched baby Roman visit with his great-grandmothers. Both of them are residents at CB. Mom was very concerned about how Roman's aunt was holding him, she got very upset. Luckily Roman's mom noticed Mom's distress and came to the rescue. Mom has always been very protective of children and babies. That's what made her a great mother and grandmother.
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Saturday, November 15, 2008

Mom and Olivia

This photo is from last April. I love Mom's smile. And the look of pure love and bliss on Olivia's face. I know that look; she is purring contentedly.

Here Comes Some Sun

Today the sun came out after my caregiver support group meeting. Though a bit cool, it was a lovely day today. After my meeting I went to the mall where I did some shopping (it was busy there, like before the holidays busy) and walking, then I came home and watched a movie, visited with neighbors, spent some time knitting and now I'm relaxing to some Mozart. And I feel guilty about not visiting Mom. I will see her tomorrow though.

The aforementioned mittens are looking good. I just finished knitting to the thumb. The next part might be tricky so I plan to remain close to my Obi-wan, Jae my neighbor. My other neighbor Kathy calls her Obi-wan so I thought I would do the same since she knows so much about knitting.

For a warm/fuzzy feeling check out "Puppy Cam" here.

Friday, November 14, 2008

Common Anesthetic Induces Alzheimer's-associated Changes In Mouse Brains

ScienceDaily (2008-11-14) -- For the first time researchers have shown that a commonly used anesthetic can produce changes associated with Alzheimer's disease in the brains of living mammals, confirming previous laboratory studies. Scientists have shown how administration of the gas isoflurane can lead to generation of the toxic amyloid-beta protein in the brains of mice.

Tuesday, November 11, 2008

Weather Report

Today was a holiday from work for me. I scheduled a meeting with the hospice nurse at CB at 2PM. Mom is better but she's still not eating very much. They had just lain her down for a nap when I arrived around 1PM. An aide from hospice arrived shortly after me. She bathed Mom and washed her hair. She was so gentle with Mom. Then the nurse arrived. She took Mom's blood pressure, which was good, and checked out some skin sores on her. They have added some new meds including something to help calm her down when she gets agitated. All in all I was quite pleased by what I saw regarding Mom's care. Mom seems better too, though I'm concerned about her not wanting to eat. Later after I got home the hospice social worker called and we talked for awhile. She helped explain the not eating thing and how sometimes with dementia this happens.

It started sleeting around 3PM and has been doing so since.

I'm trying to knit some mittens with some lovely yarn from Annie. I've never knitted with double pointed needles so I'm struggling with this. I would like to use a circular needle, that would make life easier.

Saturday, November 8, 2008

Don't Give Up Hope Ever

Here is a sight no one ever expected to see.
This is Lily(front) and Olivia on Mom's bed.
This happened sometime last summer. It took Lily 18 months to come out of my room after we adopted Olivia. Lily was my cat, I'd had her for several years when we decided to adopt Olivia. Olivia bonded with Mom and would sit on her lap and sleep with Mom at night. She did a wonderful job at keeping Mom company. She would check on Mom periodically throughout the day to make sure she was OK. When Mom would cry Olivia would kiss her. I'm going to try to take Olivia to visit Mom, once I get her claws (Olivia's not Mom's) trimmed. I think she is really missing Mom.
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Much Better

Mom was up and playing catch with the group when I arrived for a visit today. She was happy to see me and I was happy to see her too! She looks good; her color is good and she seems back to her baseline. I spoke to the RN and she said that Mom has been doing well. I'm going to make another visit tonight around dinner time to make sure she is being fed. But she looked good and that makes me happy. I actually feel like I can relax, but just a little. Hospice is also being vigilant so having those extra eyes makes a big difference. I know that Mom is getting cared for and that is a relief to me. But I will continue to be her advocate and to make sure that she is treated with dignity and compassion. I've included a photo of Terri, Mom's home healthcare worker. Terri and Mom used to love to watch Ellen together everyday.

Our weather has taken a cold turn. It's in the 30s today and windy. Earlier this week it was sunny and in the 70s. Midwestern weather can turn on a dime. That's what makes it exciting to live here :)

Friday, November 7, 2008

Cross Your Fingers

Tonight I'm going to stop by to see Mom. I spoke with the facility director yesterday and he was very understanding and said he would get to the bottom of it. I had better see some improvement today. I hope Mom is having some pleasant moments. The life enrichment coordinator told me that Mom was upset at Monday's music program and she started crying and wanting to leave. I was wondering if maybe a certain song had triggered an emotion, because normally she enjoys listening to music. Some songs, like Amazing Grace, will bring up some emotions and she will cry. We may never know the reason why she got upset, in fact it may have nothing to do with the music. I also brought up Mom's love of coloring which it seems the LEC knew nothing about. I know we filled out the paperwork quickly but I've got to believe that we mentioned Mom loves to color. It's the perfect way to calm her down and give her purpose.

Wednesday, November 5, 2008

Raisin' Heck!

Today after work I stopped by to see Mom. The social worker and the chaplain from hospice had both stopped in to see her and left note. She was in bed when I got there so I searched out the RN asked what was up. Had she eaten today? Taken her pills? Been out of bed? No one seemed to know. They said they asked her if she wanted to get up for dinner but she refused so they left her in bed. I asked if we could get her up as she seemed amenable to it when I asked her. We got her up (after I had a dressing down from the LPN who told me that she didn't have staff to give one resident 'special treatment') I told her that we are paying a lot of money for extra care that we had better be getting or else! Then I told her that it seemed like Mom was being left to languish in bed and I was not going to put up with that. I said that I'm concerned that now that Mom is in hospice that she was being left to let nature take it's course. I will not stand for that. And I put this woman in her place. The caregivers told me that there is a sign in the break room that instructs them not to get Mom out of bed. I asked what the purpose of that is. No one seemed to know. The aides are only doing as they have been instructed. I'm trying to get to the bottom of who is instructing them. Tomorrow I plan to speak to the executive director and voice my concerns. BTW, Mom ate quite a bit of her dinner, and she expressed impatience when I was too slow to feed her. She drank her juice and took all of her pills. Is she just doing this for me or are they not trying hard enough? I know that this is a thankless job, hell I did this job for 3 years! but this is a living, breathing person who is loved very much by her family. I guess for the workers this is just a job, and I understand that I guess. That is why it is important for me to remain as involved as possible. The caregivers seem to be so kind to her and so caring. But are there enough of them? I need to learn more about what I can expect from assisted living memory care I guess.

I'm soliciting ideas for things I can take for the caregivers to thank them. Candy? Some have expressed their love for chocolate. Maybe a nice box of chocolates? Any other ideas? Many of the caregivers are Somali and I'm not sure if there is something that they might really like.

John McCain Concession Speech

John McCain is a class-act!

President-Elect Barack Obama in Chicago

John McCain, what a gracious man you are!

Congratulations President Obama. Godspeed.

These two men are true Americans and I'm proud of them both.

It's the End of The World As We Know it And I Feel Fine

The election is over and the campaign is history.

The clergy from hospice called to say he was stopping over to see Mom today. I'm still too numb for anything to sink in.

God bless you all.

Tuesday, November 4, 2008

Hospice

Today Mom was accepted into a hospice program. She did not want to get up out of bed today, and she did not want to eat. She acknowledged my presence when she awoke and held my hand. Yesterday however she took part in the sing-a-long in the afternoon. The rollercoaster ride continues. I feel so guilty about not spending all of my waking moments with her. I know that I can't do that though. Yesterday I was too worn out to stop over to see her, and now I feel guilty about that. I wish there was a rulebook for this. But there isn't. She seems comfortable. And hospice will help me out now with this decision making process. It's no longer all on my shoulders. I feel numb. I love you Mommy.

Monday, November 3, 2008

Vote!

Tomorrow is election day. I'm looking forward to this election being over.

I am meeting with a hospice tomorrow. They are going to evaluate Mom to see if she is a candidate for their program. I don't know what to think about this. I don't think she is 'near the end of life'. I do want her to have the best care possible. So I don't know what to think.

Sunday, November 2, 2008

Today I convinced them to get Mom up out of bed. She had had enough of lolling there I think. I had received a call from CB at 12:30 AM. Seems Mom did not want to be alone and would yell and scream when left so. I told them to sit with her then. And she might also be hungry. At lunch I went and fed her. She ate all of her yogurt and some of her chicken, vegetables and mashed potatoes. She said she didn't like the hot meal. I left her enjoying the company of some of the other residents. I hope she had a pleasant day.

Saturday, November 1, 2008

This video is from a few months ago. mom seemed better today and she drank some juice for me. She was very willful too which is a good thing. She's on the mend I hope. When I came in her room she was napping. I said 'Hi Mom' and she awoke with a start and said 'You scared me'. I stayed with her for about 2 hours and she slept and woke periodically. She didn't want her chicken noodle soup so I suggested ice cream.
video

Friday, October 31, 2008

Last night I stopped by CB after work. They were just getting Mom up for dinner. I was able to feed her all of her dinner plus dessert and she seemed to be doing better than the previous day. I left her watching TV with a group of residents. Tonight she was sleeping when I stopped by. They had not been able to get her to eat much at all. I'm hoping that she is just sleeping off her illness but at this point I'm not sure what to think. She awoke briefly and acknowledged my presence then fell back into a peaceful sleep. I hung around for a little while, kissed her goodnight and told her I love her and left. I had called hospice today, the earliest they can meet with us will be next Friday, a week from today. It was suggested that we try another hospice that works with CB residents so I am waiting to hear from them to set up an appointment.

Tonight I went through Mom's desk and low and behold I found a health care directive in which she clearly and concisely lays out her wishes. Thank you Mom. I also found her plans for her memorial service. Not that I think we'll need these soon, but one never knows.

I love you Mommy. Rest peacefully tonight and get better.

Thursday, October 30, 2008

Homeward Bound

Mom is going home to CB today. I think she will be happy about that. A and I conferenced with the Palliative care team today. They have recommended that Mom be evaluated for hospice. We are not sure if Mom's sharp decline is from the UTI or from a progression of her dementia. In either case, it will be helpful to have another resource to help make her comfortable and add some quality to her life. The palliative care doctor believes that Mom is having some problems with swallowing which may or may not be related to her UTI. It's most likely related to her dementia.

How am I with all of this? Shocked, stunned, relieved, worried, sad. I realize that having hospice involved does not mean that the end is imminent. I learned that from watching my dad who lived months after he went into hospice. It has happened so fast with Mom though. She still needs to be evaluated but I think they will find that hospice is appropriate for her. And that makes me sad.

Wednesday, October 29, 2008

One Day at a Time

I visited Mom tonight and she is making progress. Her eyes were clear and she seemed engaged. She could answer some of my questions and I was able to get her to drink some water through a straw. I could even see a flicker of her sense of humor while we watched Seinfeld - she rolled her eyes at some crazy thing they did. She didn't tear up until I put my coat on and started to leave. I told her that it was important for her to rest and I would see her tomorrow.

Tomorrow my sister and I will have a teleconference with the palliative care coordinator at the hospital to help plan for the future with the goal of keeping Mom comfortable and maintaining her dignity.
I just spoke to the social worker at the hospital and Mom will once again be kept overnight. They want to continue to monitor her condition and try a new pain medication called Ultram. She is about the same today.

Tuesday, October 28, 2008

Mom seemed better today. She ate most of her breakfast and all of her lunch. Her color was good. However they decided to keep her overnight for observation.

I am doing better. I was really upset by this whole situation. It affected me quite deeply. Even though I know Mom is not going to ever be 'herself' it's still hard to watch this deterioration as my fellow caregivers know. I tend to 'feel' everything and am extremely sensitive. I also am a 'mama's baby'. But this situation has taught me to trust my intuition and to feel confident in my care of Mom.

Monday, October 27, 2008

I just got back from the hospital and had a message from the social worker there. Mom does have a UTI and she was dehydrated. The CT scan was negative, meaning they did not find evidence of a stroke (thank you God). The doctor thinks she will be discharged tomorrow. Thanks for the prayers everyone.
Took Mom the the Hospital ER last night. She hadn't eaten all day and was very warm when I arrived at CB. She just didn't seem right. She had a CT scan and lots of bloodwork. Waiting for results.

Saturday, October 25, 2008

Mom was better today though not totally herself. Her color was good and she let me feed her a slice of peach pie. She welcomed me in her usual manner (tears and relief to see me) and teared up again when I left (this always rips my heart out and I just want to scoop her up in my arms and run out with her--but I know they are taking good care of her). I'm planning to call the doctor on Monday and describe how she was last night. It might just be that she has a cold or a bug but I need to know that it's not one of the new meds for my own peace of mind. I'm too tender-hearted for this and it's probably a good thing that I didn't have kids. I'd be a neurotic mess every time they were ill. I also worry about whether moving to a care facility has hastened her decline. I have to keep reminding myself that she is well taken care of there and that I could no longer care for her at home.

She has a new wheelchair which is a much better fit for her and she can push herself around.

I went to a craft show and then out to lunch with my friend Bettie today. It was good to get out and get my mind off of everything. But I feel guilty and I have to stop feeling that way. Mom would want me to enjoy life, I know this.

Allyson is attending Game 3 of the World Series in Philadelphia tonight. It is raining there and I'm hoping that it lets up in time for the game. She is a huge baseball fan so she will enjoy this. Meanwhile, snow flurries are in the forecast for here tomorrow.

Friday, October 24, 2008

Tonight when I visited Mom she wasn't herself. She was pale and her hands were swollen. She didn't respond in her usual way when she saw me, in fact she didn't respond at all. It freaked me out and I started to cry. I fed her dinner and she ate it all with no problems, even her dessert. They took her vital signs and they were fine. She didn't have a temperature. After dinner she started perking up and her color was better. But the RN and I were debating whether to call 911 and take her to the hospital. I just had never seen her like this except when she was a the hospital and they had just started her on Geodon. I feel guilty about not visiting her since Tuesday, especially since it appears that she wasn't 'herself' all day. This is so hard. I cried all the way home and then I cried some more. I want my Mommy.

On another front, my sister-in-law is in the hospital having shock treatments. Her depression and anxiety has deepened and she is not in good shape. I'm praying for Mom and sis-in-law and hoping that God will wrap them in his arms and keep them safe.

Monday, October 20, 2008

A Good Day

Yesterday Mom and I spent some quality time together. She had just gotten up from her nap and was a little drowsy at first, but once she woke up it was nice to spend time with her. Her shaking seems only to occur when she is agitated. She hardly shook at all yesterday. It was great to see her enjoying herself. We are both adjusting to the change after a month! Can you believe it has been a whole month? She seems to be well cared for and happy for the most part. I'm so glad.
Sometimes it's so hard to remember to let God handle our worries and problems.

Sunday, October 19, 2008

Picking up Willoswitch and Lily's tag...

Things you might not know about me.

  1. I steered a 700 foot ore boat on Lake Superior.
  2. In the 90s I attended numerous Guns 'N Roses concerts throughout the US
  3. I was a political conservative in college and remained so until George H.W. Bush asked 'Are you better off now than you were 4 years ago?" and my answer was 'no'.
  4. I've traced my geneology on my dad's side back to 1600s Yorkshire, England.
  5. I majored in history and political science in college and now work as a computer programmer.

Thursday, October 16, 2008

I attended the family support group last night at CB. There were 5 of us plus the Life Enrichment Coordinator. It was nice to meet others who have loved ones at CB. They all seemed to know Mom and I have met many of their loved ones. There was only one other child who attended. Her father is a resident at CB. After the group met, I went and spent time with Mom who was very agitated. She was shaking, which is something she has done over the past few years, but last night it was much more extreme. I was worried that one of her new meds might be causing these tremors. I spoke with one of the nurses who had also observed the tremors and she felt that it was due to anxiety because it seemed to get worse when she was anxious. I'm not sure about this and will continue to observe her. Poor Mom, she was quite upset last night. I worry about her even though I am told that she is settling in nicely.

I have been sleeping through the night and it has made a big difference in my physical and mental health. Tonight I went shopping after work; something that I haven't done in years. I still feel guilty about enjoying time by myself, but I'm getting better about that. Everyone has told me that Mom seems to enjoy the different activities at CB and she always smiles and shows affection to the caregivers. It's just when I come on the scene, she gets upset and agitated. So I try to limit my visits, at least for now.

Mom's cat Olivia has taken to acting weird. She will play with her mouse in the bathtub and she will vocalize for no reason. She wakes me up around 3 or 4 in the morning by licking my face and biting my bracelets. She's very territorial around Lily too, trying to keep Lily away from me. However, I'm Lily's person and she will not tolerate being kept from me. And I won't tolerate not having her around me. I love Olivia very much, but Lily is my baby. We have a special bond. I have a bond with Olivia too, but it's different. I love them both, they are great kitties.

Sunday, October 12, 2008

Sunday

Today I visited Mom and she was agitated and bewildered. I got out her crayons and coloring books and we sat down and colored together. One of the caregivers joined us. This is always very calming for Mom to color. Another daughter was visiting her mother and she mentioned to me that Mom cries a lot. Quite a while ago Mom made me promise never to put her in a place for old people. Whether or not she remembers that I don't know. What I do know is that it has only been 20 days so hopefully it will get better with time. I left her with 2 of the aides who were talking with her and distracting her. I hope she gets some happiness out of her days.

We pay extra for caregivers to manage Mom's behaviors, which include the agitation. You would think that this would be a given with Alzheimer's but I guess it isn't. Today's market can virtually charge anything, at least here in Minneapolis, because beds for persons with memory loss are few. Makes you wonder doesn't it? What will it be like as the tsunami of baby boomers age and enter assisted living facilities. Is this country ready for it? I don't think it is.

Saturday, October 11, 2008

Be The Change - Minneapolis For Obama

On Thursday I took a cab home from work so that I could take Mom to the doctor. The driver was listening to Rush Limbaugh on the radio. Rush posed the question "Do you want to wake up on November 5 and hear that Barack Obama is President?" "Yes!" I said. And that started a whole conversation about politics and the US. This driver is an immigrant who recently became a US citizen. I asked him if he planned to vote and he said he didn't have time. I told him that John McCain was hoping for just this. By the end of the ride I think I had convinced him to park his cab and go vote.

Thursday, October 9, 2008

Our Excellent Adventure

Today Mom and I took a lift ramp van to the doctor's office. It was Mom's first time away from CB in two weeks. We had an appointment with a geriatrician and he reviewed Mom's meds and added and subtracted there. My sister wanted to know what type of dementia he thought Mom has (Alzheimer's or Lewy Body). We had been trying to get in to see this doctor for years. Mom was a little cranky about being uprooted and transported to the doctor but she settled down. Even so, he added another med, a mood stabilizer. Mom had a slice of lemon merangue pie when she got back to CB. Now I'm watching Seinfeld. I need to laugh after the latest drop in the stock market.

Wednesday, October 8, 2008

The Glass is Half Full

I am feeling more optimistic today. Thank you everyone for your support.

Tuesday, October 7, 2008

Things Can Only Get Better, Right?

I'm having one of those days where I wonder if it's all worth it. I hate reporting to my supervisor and my manager; neither one speaks to me and I'm feeling completely blackballed at work. Why? Because I suffered a debilitating bout of major clinical depression and anxiety (a lovely combination...not!) a few years ago and I not only didn't care about work but every day was a struggle to keep going. At the time my life was fine, but the chemicals in my brain were way out of whack and this caused my depression. They continue to hold this against me. Isn't that totally absurd? Before I had a purpose in my life which was to take care of Mom and this really didn't matter. Even though I thank God every day that Mom is just 3 miles away, I miss her so much it hurts. I'm grateful too for the caring and gentle women who care for her every day at CB. But I'm worried about her money which has been dwindling away with this stupid Wall Street mess. I worry about how she is adjusting to her new home and if she is happy there. My worst fear is that she is miserable and confused about how she ended up there. I just want to throw in the towel and yell uncle. I keep waiting for life to get better but it only seems to get worse.

Sunday, October 5, 2008

What a Beautiful Smile!

I visited Mom yesterday. She is doing OK and seems content. I took this picture after lunch. This is in the dining room at CB.

Friday, October 3, 2008

Friday

TGIF! It's weird to work on Fridays. I'd forgotten how laid back people at work are on Friday.

Mom is continuing to settle in to life at CB. She is working with physical therapy and she actually was able to stand and bear weight. She is also working with them to use her walker. My sister got an email update from the facility's marketing director which said Mom was, at that time, working on stuffing a scarecrow. There is always something going on at CB. I'm looking forward to the family support group on the 15th. I've already been contacted by a resident's wife via email. She got my email address from the director of Mom's day program.

I've been trying to get out and enjoy the fresh air and sunshine and get a little bit of exercise. Last night I had my hair cut and colored for the first time in months.

The kitties are doing OK too. Olivia had her annual checkup and I've seen them cuddling together. They've been hanging out in Mom's room, snuggling on her bed. Olivia seems to miss her. I'm going to try to take her to visit Mom in a few weeks. It might be good for both of them to see each other.

I received a letter from friends from Michigan. We grew up next to this family and they are good friends of Mom's and Dad's. I told Mom about the letter and asked if she remembered them. She seemed to remember who they are! She's usually pretty good about remembering certain things, especially those things from her past.

Wednesday, October 1, 2008

Time with Mom

Last night I went to watch Dancing with the Stars with Mom. It was so nice to be with her and it really made us both happy. I arrived early, around 7:15 and they were trying to put Mom to bed! She wasn't ready for that. At 8:30 they were back; the person who helps put Mom in bed using the Hoyer lift was leaving at 9:00. So I left and they put Mom to bed. Mom kept telling me that she was scared and I told her she was safe. Besides if anyone hurts her I'll rip their face off! She seems to be happy and is making her way around the community during the day according to the marketing director who sent an email to my sister. Today she was making a scarecrow. They really do seem to do fun things. I hope she is enjoying most of her time there.

I'm adjusting slowly to her absence. It's hard to come home to an empty house. I'm sleeping through the night now too and seem to be well rested. The kitties are adjusting to Mom's absence but I still plan to take Olivia for a visit at some point, mostly for Olivia's sake. She seems lost without Mom but Mom hasn't mentioned her.

Monday, September 29, 2008

One Week

Tomorrow is one week. I'm trying not to visit Mom everyday because I'd like her to settle in and it's just too painful to leave her there. She keeps telling me she wants to go home. Now I know that 'home' might not be a physical location for her, you can never tell with memory loss. I tried to observe her yesterday and she did seem OK. I hope so.

I'm trying to watch Dancing With The Stars, but it is something Mom and I do together so it's hard. Tomorrow her cable TV is supposed to be hooked up so maybe I'll go watch with her then. I miss her being around the house.

Friday, September 26, 2008

A Visit

Mom's new bed was delivered yesterday. It's quite an interesting contraption; it has a remote that slowly raises and lowers it. This should be ideal for Mom. Tonight when I arrived the aides were putting Mom to bed. She decided, upon my arrival, that she wanted to get up so I helped get her dressed and then helped her swing her legs to the floor. She was able to stand up and transfer into her wheelchair with the help of two aides! I signed some paperwork which will allow a physical therapist to work with her starting on Monday. My hope is that they will be able to build up some of her strength so that she can stand and bear her own weight again. As I was leaving I met a daughter of one of the residents who told me that her mom has lived in this facility for 2 years. The care she receives is very good. It is always reassuring to hear from a resident's family. She also told me that I shouldn't feel guilty about putting Mom there. I just want Mom to have some happiness and enjoy herself.

Wednesday, September 24, 2008

Things that Go Bump in the Night

Mid morning I got a call. Mom had fallen out of bed over night. She wasn't hurt, they'd put a mattress on the floor at my sister's urging (good thinking on her part!) but they couldn't get her back into bed. They had to call the RN in the middle of the night to come in and help. They said I needed to get a Hi-Lo bed delivered right away so I blindly called a medical supply company and learned that I needed a doctor's order for this. I called the doctor and left a message. Then I called my care manager and she told me to hold on, this was the facility's job not mine. Thankfully they took over where I had left off. Then later this afternoon they told me that the Hoyer lift (pictured left) that is used to transfer Mom from the bed to her wheel chair tipped over while they were transferring Mom. Again, Mom wasn't hurt (thank God). I was pretty worried and stopped by after work to see how Mom was doing. I guess my emotions got the best of me because, after making sure Mom was OK, I left and I cried all the way home. I miss Mom so much and the stress of the last few months caught up with me and I lost it. On a positive note, Mom seems quite content and happy in her new home. I asked her if she liked it there and she said 'Yes'. That warms my heart. There will continue to be bumps in the road, but hopefully, once the facility gets the new bed and reinforces training on the Hoyer lift, things will settle down into some sort of normalcy.

It didn't help that I had a crazy day at work too between trying to catch up with projects and trying to find a new bed for Mom. When I finally got home there were two boxes of flower bouquets from my wonderful brother-in-law. One for me, and one for Mom. Isn't he thoughtful??

Tuesday, September 23, 2008

Breathe...A Deep Sigh of Relief

Turns out we didn't have to blame anyone. We drove to the hospital around noon and arrived just before 1:00 PM. Mom was finishing her lunch, her bags were packed and the medical transport had arrived and was waiting. The only glitch was when we got stuck in the elevator as we were leaving the hospital. We only spent about 10 minutes in the elevator, but can you believe it? My sister rode with Mom in the medical transport. They arrived a little late because the driver missed the exit and had to turn around, but they made it! We brought Mom into the building and several people were there to welcome her. There is an aviary near the entrance of the building and Mom was very excited to see all of the birds, finches I think, and we sat and watched them for a bit before we took her back to her room. We sat for a while pointing out her things in her room. One of the residents has a cat who came down to welcome Mom to her new home! Afterwards we explored the building checking out the dining room and the courtyard. Then it was time for dinner, we took Mom to the dining room and the aides took over and we left without incident! My sister was so relieved. The staff is very caring and very good with the residents. Mom's evening aide stopped by and Mom was patting her check and quite friendly. I think that the stay at the hospital helped to make this transition a little easier. I'm sure we'll have a few rocky patches but at least we've had a good start. Thanks for all of the thoughts and prayers that were sent our way. They quite obviously helped!

Monday, September 22, 2008

Tomorrow's the Big Day

Today I went to work and my sister stayed home to meet the movers, set up Mom's room and await the delivery of Mom's new bed. I stopped by after work and the room was all set up, minus the bed which hadn't arrived yet. The room looks cozy and home-like. I hope that Mom will recognize some of her things and eventually she will settle in. She is going to be mad though. We are going to blame the doctor for the move to memory care. She is scheduled to be discharged from the hospital tomorrow at 1:00 PM. A and I will drive up to meet her and A will ride back in the wheelchair-accessible van with Mom. Mom had been having a good day until I called and she started crying. I feel so sad for her. Cross your fingers that she will eventually settle into her new home.

Sunday, September 21, 2008

Heartbreaking

We are home from a visit with Mom at the hospital. Visiting hours are usually busy and tonight was no exception. Several families were visiting their loved ones. J was shuffling from room to room. It breaks our hearts to see him so lost. P was being helped in the bathroom, there was a security guard there to assist because P can become aggressive and might hit his caregivers. V was being fed by her loving daughter who also works at the hospital. Mom was eating her dinner of salisbury steak. She seemed to enjoy it and unlike yesterday she wasn't wearing some of it on her shirt. After dinner she sat and colored in her Hello Kitty coloring book with us. I gave her a head, neck and back massage which always seems to calm her down. She was crying when we left; she wants to go home so badly. Soon Mom, soon. Except it won't be the home you remember. It will be a new home, one with residents who also have memory issues. I hope that she will settle into her new home eventually.

This morning we dropped off some of Mom's things. The residents were having a religious service in the square. As we were leaving, another daughter told us that her mother has lived there for a year and they really like the place. They take good care of her mother, and the caregivers are very gentle and caring. It gives me a little bit of solace to know this.

Saturday, September 20, 2008

Getting Ready for the Move

Mom was having her lunch today when we arrived for our visit. Her arm was caught in a blanket and she was in quite a huff. My sister sprang to her rescue and Mom's face just lit up when she saw her. We sat and chatted for an hour and we made sure that the nursing staff was treating her well (they were). Four of the patients had been discharged so it was a smaller group today. Mom now has a whole room to herself. Not sure how long that will last though. We are hoping that she will be discharged on Tuesday. My sister has extended her stay for which I am very grateful. I am going to miss her immensely when she heads back home. We have been busy labeling clothing and packing up belongings. We've bought some additional items for Mom's room to help make it feel more home-like. And we've been filling out tons of paperwork; HIPAA forms and Daily Path forms that explain Mom's likes and dislikes.

Friday, September 19, 2008

A Place for Mom. Finally.

Today we signed the paperwork for a new place for Mom. She will be moving to a lovely facility, close to home, that specializes in memory care. In fact, that's the only thing they do. We have sticker shock after they figured out how much it will cost to care for Mom.

We finally were able to talk to the doctor at the geriatric psych ward. He said Mom definitely has vascular dementia and there is evidence of ischemic events. This was the same doctor that broke the news to me that Mom has dementia (no kidding). Mom was doing much better yesterday when we visited. In fact she was getting sassy. But in a good way though.

We are exhausted after this. It has been a difficult week for all of us, including Mom. Thank you for your prayers and concerns.

Thursday, September 18, 2008

New Developments

Yesterday my sister and I checked out two more living options for Mom. One was a traditional nursing home. We were totally freaked out by our experience to say the least. Before our visit I had checked medicare.gov to see if there were any complaints. There were none. After our visit I checked the state health department website, where I work, and found 9 complaints. Several were substantiated. The lesson here is to always check your local or state health department for complaints.

We also visited another memory care facility. This particular facility is one that we had visited last November. We were not impressed back then thus did not consider it. It has since been sold to another company and we made an unannounced visit yesterday. They evaluated Mom this morning and the charge nurse seemed to think it went well. We have yet to hear from the facility though. I checked for complaints and found 3, 1 of which was substantiated. These occurred under the previous owners. If she is accepted I will be on them like a hawk, making sure my mother gets the best care. The one lesson that we have learned is that even the best laid plans can often go astray. We thought we had had all of our ducks in a row and that we would not end up in a desperate situation. We were told over and over that we were being proactive yet somehow we still ended up in a desperate situation.

Last night was our neighborhood ice cream social. My neighbors all wanted to hear how Mom is doing. It turns out that one neighbor is an RN and works for the gerontologists that we have been trying to get Mom into. She took our info and talked to the doctors today and now Mom has an appointment next Tuesday with a highly recommended gerontologist. Our neighbor was appalled by what we have been through. She is totally against medicating dementia patients for behavior. We are quite relieved to have this person on our side. She will be an excellent advocate for us as well as an excellent resource for everything else. We are so lucky.

This morning Mom was agitated and not very hungry. My poor Mommy.

Tuesday, September 16, 2008

More Frustrations

Today we learned that Mom needs assistance standing, she cannot bear any weight. Therefore she will go from the hospital to a nursing home where they will try to rehabilitate her so that she can stand and bear weight. If she cannot attain this then she will most likely remain in a nursing home. If she can regain some strength and stand enough so that she can bear weight then she might be a candidate for assisted living/memory care. So tomorrow we will be looking at one of the nursing homes that may have an opening. We still don't have a discharge date from the hospital. And we still haven't heard from any of the doctors about Mom's condition. We are frustrated.

Monday, September 15, 2008

An Update on Mom

Today was a busy day. First we visited a new assisted living/memory care facility for an hour and a half. We feel that if this facility will accept Mom, it will be a good fit. It's a small facility and is very home-like. The staff really cares about the residents. Then we went to see Mom at the hospital. The patients were watching "Grumpy Old Men" and Mom was laughing at some of the antics. She has been so happy to see us all and there hasn't really been any confusion about who is whom. She has been very tearful though and when she gets angry they have been 'medicating' her. She seems very subdued when we visit her. I can't wait to get her out of there. Pray that the new facility accepts her.

We talked to the social worker at the hospital. Mom's care team had a meeting today. They seemed to think that Mom would do well at an assisted living/memory care facility. It was sort of a relief to hear this as we have been very concerned that Mom might end up in a nursing home. Again, we have our fingers crossed that she will be accepted at this new facility.

Friday, September 12, 2008

No News Really

Mom is still anxious and having some angry outbursts. I haven't talked to the doctor so I don't know what the results are of the x-rays. I chalk up the anger and anxiety to a change in nurses. Last night when I saw her she seemed to be sedated. Usually her face will light up when she sees me but last night she was so flat emotionally.

They are using a lift to get her out of bed and into her wheelchair. It seems to fit fine in her tiny little room at the hospital. I'm still worried about her being able to go from hospital to memory care. After the whole denial from the last place I'm just gun shy.

My sister will be here tomorrow and together we will get some answers from her doctors. The nurse seemed to think that Mom would be there 'for a while'. I'm not sure what how long 'for a while' is. The social worker had said 12-15 days initially when I talked to her. I guess it all depends on whether they can get her 'under control'. God this is painful. I miss her so much. I want my Mom back with me.

Thursday, September 11, 2008

Stronger Every Day

I spoke with Mom's nurse today and she said that Mom is doing much, much better. They have diagnosed her with a UTI and they also want to do some x-rays to determine why she is in pain. She is still anxious and aggressive, verbally, when they try to care for her, but she is a lot more accepting and today the nurse said she even gave her a kiss on the cheek. I'm so relieved that she is receiving good care and that they are getting to the bottom of her issues. I miss her so much though, and her kitty is lost without her. I'm going to see her tonight after work and I can't wait. Thanks everyone for your thoughts and prayers.

Tuesday, September 9, 2008

Sigh of Relief

Mom is settling into her new room in the geriatric psych unit. It is a nice setting, doesn't look too institutional and the staff seems good. Hopefully they will get her meds straightened out and figure out what is causing some of her behaviors. It went easier than I thought it would. But she was angry and upset when I left. My Mom the fighter was ready to leave with me. And I wanted to take her. But I know this is what is best for her. We need to get to the bottom of this and make sure that she receives the best care. We love our Mom and want the best for her.

I'm touring a new memory care facility this afternoon that seems like it might be a better fit for us. Cross your fingers and send your prayers our way.

Thank you my blogger friends, I wouldn't be able to do this without your love and support and the love and support of my family. You all mean the world to me my friends.

Oh...I slept through the night last night! Woo hoo!

Monday, September 8, 2008

A Huge Bump in the Road...The Cheese Stands Alone

The assessment did not go well today so rather than moving to ALF Mom is going to a geriatric psych ward for evaluation. The ALF evaluators were concerned about Mom's behaviors including refusing toileting, inability to transfer easily from chair to wheelchair, and today, while her caregiver was freshening her up she tried to bite her (this is a first). The ALF will not accept her until she has been evaluated and some of these behaviors have been addressed. So tomorrow I will be riding with Mom to the psych ward. This has been very traumatic for me to say the least. However, everyone assures me that this is for the best for both Mom and me. They will do all sorts of tests to try to find out why Mom is behaving in this manner. Please pray for us and keep us in your thoughts.

Last night Mom woke up at 10:30 PM and was up for the rest of the night. I am exhausted.

Sunday, September 7, 2008

Vitamin B12...Miracle Drug?

Mom seems like a different person since receiving her B12 shot on Friday. She is more cognizant and able to understand instructions better, at least for me. She slept from 9:00 to 3:00 AM tonight, and last night she slept right through the night until 5 AM. Now she is up, bright eyed and bushy tailed, coloring in her books. She had been receiving them every month up until a year ago when she stopped going to the clinic. The doctor wants to start them back up now and after seeing her improvement, I agree with the doc. Mom's B12 was just slightly above where it should be when we started the shots. Now it could have been really low. She's still confused, just not as much as she had been.

Poor sister is experiencing Hurricane Hanna. Last time I spoke with her she was watching water pour into her basement from the egress window and hoping it didn't get too high. I hope she and her husband were able to stem the flow of water. She has had a tough week too. I hope things get better for her soon.

I received my Clickfree backup drive yesterday and immediately backed up my photos, music and files from my laptop. I was pretty impressed by it; it was plug and play easy to use. This will be extremely useful for future backups and now I feel safe knowing that all of the music and videos that I've purchased on iTunes is backed up along with all of my digital photos.

Friday, September 5, 2008

Mom's Excellent Adventure

It was a long day today. I got out early and bought Mom's new bed for the ALF room. After that I came home and removed her current mattress and box spring from the frame. The bed has been too high for her and she can't touch the ground with her feet. Removing the frame has made a difference. The care manager from the home health agency stopped by around noon so that we could brainstorm ways to care for Mom in the next week. After that she and the caregiver helped me get Mom into her wheelchair and eventually into the car. That took almost 40 minutes. At the doctor's, it was decided to take Mom off of one of her blood pressure meds. She received a B12 shot too. The doctor scheduled a CT scan to check to make sure that she doesn't have NPH. Then, she took a ride home in a van with a lift ramp. She did pretty well, with a few protests. She was restless last night so neither of us got very much sleep. I hope she sleeps tonight.

Wednesday, September 3, 2008

The Best Care that Money Can Buy

Today I was thinking about just how much work is involved in caring for a person with dementia and I wondered about people who were caring for loved ones on a limited budget. Like, what if I couldn't afford to put Mom in an assisted living facility, could I deal with the idea of putting her in a nursing home? I don't think I could, not at this point. But what about those families who have no choice because of financial constraints? They are burned out from caregiving. How much help is there really out there for lower income families or even middle class families? Not much in my eyes. Most of us are overwhelmed just by trying to navigate 'the system'. Throw in the financial burden and well, you can see why the stress level is so high. So I thought about what care is like in other countries. And I started to do some research just to find out what is available. I found this article which explains that dementia care in Europe isn't much better than it is here. But there are other ways to support the main caregiver too. For example, families can help. Unfortunately the burden of care is usually placed on one primary caregiver, usually a daughter, son or spouse. If members of a family cannot provide physical support there is always emotional or financial support which can be provided. If you're wealthy, then you can provide the best care that money can buy. But doesn't every dementia sufferer deserve that, not just the ones who can afford it? Long term care insurance can help fill the gap, but it can be expensive. So how do burned out caregivers handle it? How have you handled it if you are a caregiver?

Tuesday, September 2, 2008

Life is like an Amusement Park Ride

Mom's mood has been like being on a roller coaster. Up and down, happy, teary. Agitated, calm. She keeps asking when she can go home. I try to distract her with a hand massage or a game and that seems to work for a while. Television programs will agitate her. Today she was watching "Little House on the Prairie". It was an action-packed episode about a runaway train. Mom was agitated and upset so I changed the channel to a comedy and she calmed down. But I'm not sure how to answer the "I want to go home" statements. It must be frustrating to be told that you are already home so I just try to make her feel safe and comfortable instead. There should be a college course on caring for the person with dementia.

I'm also worried because I was never able to obtain a follow-up specimen to make sure that her UTI is gone. I feel like such a poor caregiver because I don't want to upset her so I choose the path of least resistance.

Sunday, August 31, 2008

Reinforcements

I've had to call in reinforcements to help me toilet Mom. Thank God for Elizabeth. She is an angel.

I have been worrying about Mom's adjustment to the ALF. I'm afraid she is going to 'flunk out' and have to come home or that she is going to hate it there and be angry and mad at me. If I can survive the next 2 weeks and continue to pray for Mom's adjustment to the ALF it will be a miracle. Please God let this adjustment go relatively well. I know she will receive better care there. If she will accept it. Outside of toileting, she is wonderful and tells all her caregivers that she loves them. Especially after the turmoil in the bath.

It's so hard to hear her say that she wants to die. I love her so much that this just rips my heart to pieces. But I don't like seeing her losing her dignity like this.

Saturday, August 30, 2008

Barack Obama Accepts Democratic Nomination

Historic Moments in US Politics

Here in Minneapolis/St. Paul we are gearing up for the Republican National Convention. Next week, I fear, is going to be a commuting nightmare for me. You see I work in St. Paul, on the state capitol complex. We will have an armed state trooper at the door into our facility for the 4 days of the convention. Parking is going to be difficult. I'm worried about whether I will be able to make it home to Mom on time.

Yesterday's surprise announcement of Sarah Palin as McCain's running mate was a shocker. I do not feel that this woman is qualified to run the country if McCain wins the election and something were to happen to him in office. If this is an attempt to attract disgruntled Hillary supporters then they've blown it. My sister and I both feel insulted by this choice. I'm sure this woman is quite capable however she has absolutely NO experience in either the domestic or international arena. Sure it garnered excitement as the first woman on a Republican ticket but that's it. On the other hand, as a Hillary supporter I was inspired by Obama's acceptance speech at the DNC in Denver. It's really time for someone with his values to take command of this country. And he's right, we as citizens should not rely entirely on government; we need to help each other by volunteering and becoming involved in our communities. I'm confident that Senator Obama can help steer my country back onto the right track. I'm always proud to be an American, but I am especially proud at this time in our history.
This morning I am deeply disturbed after reading an article in the paper about nursing home aides who abused residents with dementia. I am so angry about this that I can't get it out of my head. The most upsetting part? They did this to 'make their job more fun'. I could spit I'm so angry. I think that not only should these individuals be prosecuted, but they should also have to register as sex offenders for the rest of their lives. These individuals were teenage girls. If any of them should ever cross my path I don't know how I could contain my rage and not beat the shit out of them! And there we have it, the stigma that people with dementia are not human. But they are. And they are someone's wife, husband, mother, father or grandparent. They are loved by someone who remembers them as a vital member of a family. I keep looking at my mom and wanting to cry thinking that someone could do this to her. I would fight them to the death if they did.

Friday, August 29, 2008

Counting down the days reluctantly

Today I purchased the paint for Mom's room and dropped it off at the ALF. I shopped at Penneys and bought a blanket, mattress pads, sheets and a comforter. It seems so weird not to include Mom in this. But she would freak.

This morning I had trouble getting Mom out of bed. She ended up slipping and I had to call the neighbor to help get her into her wheelchair. Then she had a manicure and a haircut today. I used a new service that comes to the home. Mom seemed really upset throughout the whole process but when it was done she was smiling and happy with her new haircut and nail polish.

Wednesday, August 27, 2008

Sundowning is the Pits!

Mom's sundowning has gotten worse with the shorter hours of daylight. Last night in bed she was sleeping fitfully. Olivia laid down next to her and Mom starting flailing her arms and hit Olivia several times resulting in Olivia giving Mom a nip. I think this has happened before because Mom has teeth marks on her arm that I have been monitoring. Mom denies that Olivia had anything to do with them. They are nicely healed now. Except Mom keeps picking off the scabs even though I have them covered with Band-Aids.

Today was mostly an overcast day. LaShay is back as Mom's afternoon caregiver and it went very well. In the past Mom has gotten extremely upset when LaShay showed up. Today when LaShay left Mom told her she loved her.

We are going to paint Mom's room a soothing shade of pale blue-green called 'Watery'. It's nearly the same color as the one we used in her bedroom here at home. We are trying to keep things as familiar as possible for Mom's transition to her new home.

Yesterday I spoke to the Geriatric Care Manager and she helped me feel a little more at ease with this decision. I know we can never be completely at peace with this though. I feel like this person is going to be a huge asset for us. She said that she has a client at Summit Place and we could not ask for a better place for Mom. She knows many of the staff there and she said they are wonderful.

Monday, August 25, 2008

Someone at work recently told me they are a Christian. In my opinion, a Christian doesn't have to say a word about being a Christian; they say it through their actions, and through how they treat others. There is a verse in the Bible, something along the lines of God saying that when you mistreat the weakest of his children you are also mistreating Him. This person who professes to be a Christian treats the weakest of God's children with no compassion or empathy. And that is all I'm going to say about that. We all have struggles and crosses to bear in our lives. It is important that we all remember that when we interact with each other. Do unto others as you would have them do unto you.

Mom had a good day today according to her caregivers. She is in a great mood and has been coloring since I got home. I started crying today thinking about Mom moving to the ALF. I worry about her being happy and adjusting to her new surroundings. I worry about the day when we will take her to that ALF and drop her off there. She is going to feel abandoned. It rips my heart out to think that she has to go through this. I've been praying for an easy transition for all of us. I wish someone was available to coach us through this. But it's not like we are the first family to go through this. Others have paved the way before us. I hope that I can build from that strength.

Sunday, August 24, 2008

What to Do?

How do we surreptitiously pack up and move Mom's stuff without her getting suspicious? That is the latest thing that we are wrestling with. If anyone has any suggestions please let me know.

Mom had a rough night last night. She wanted to go to bed at 8:00 PM but then she was up at 10:30 PM and later at midnight, 1:00 and 3:00. She was up at 5:00 again. I don't know if she was dreaming or what but she was crying out throughout the night. I asked her if she was in pain or if she hurt anywhere and she would say no. I'm not sure what was going on, most likely something related to the ALZ.

We are using the wheelchair to get her around. This is especially hard when she needs to use the bathroom. She seems to have forgotten how to get up. It can take several minutes to gently persuade her to stand up. I also think she is afraid of falling. It's sort of like a kid who has hurt himself; rather then acting upset the parent brushes it off and then the kid doesn't cry. Unfortunately I tend to get panicky and freaked when Mom falls and she has chosen to remember this. This is my theory anyway.

Saturday, August 23, 2008

Mom has been having trouble maintaining a standing position since yesterday afternoon. She crumbled on the way to the bathroom when she let go of her walker. Then today when I was getting her up she crumbled again when I was transferring her to her wheelchair. Both times I had to call the neighbors for help. It's a good thing there is a light at the end of the tunnel for us because I can't keep imposing on the neighbors. And Mom feels so bad when she falls, she doesn't forget it. I'm afraid she's going to get hurt. Yesterday afternoon she fell in a tight space and it took several tries to get her up. She fell once onto her knees onto a tile floor so I've been checking her knees for bruises and sore spots.

The bunny in the window well was saved by Mom's caregiver. She threw a blanket over it and lifted it out of the well.

Friday, August 22, 2008

The Place

Today I am going to sign the paper work for Mom's room. Unlike the other facility, the marketing person played 'phone tag' with my sister until they finally connected and my sister spoke with this person for nearly 20 minutes. I think she has a better feeling about the new ALF now. The other ALF called me and apologized but reiterated that 'beds for memory care are scarce'. My sister mentioned the whole fiasco to the director of the new facility and she said that that facility has been experiencing some 'shakeups' at the top. I kind of picked up on that.

Meanwhile at home Mom has a new caregiver, Joy. She's a college student. Yesterday she gave Mom a manicure and a pedicure. She has a beautiful coral polish on her finger nails. Joy is a keeper. Once again I marvel at our luck with home health caregivers.

Last night Lily bolted to the window in my room which is in the lower level of our house. This morning both cats were glued to the window so I took a look. A rabbit fell into our egress window well! I've called our homeowners association to see if they could send someone to help get it out. It is so cute but so frightened. Poor thing.

Tuesday, August 19, 2008

A Place for Mom?

I stopped by the ALF after work and saw the room that will be available in mid September. It's a nice room, with a west exposure. It's a few doors down from one of the dining rooms. This ALF has a swimming pool and an exercise room. Mom used to do water aerobics in her former life. She might enjoy doing some exercising in the pool. They take memory care residents down to the pool a few times per week. And Joyce, the woman that I hired to be Mom's companion last fall helps with the transitions there. It would be a familiar face (if Mom remembers her). The best part? The ALF is minutes from our home. I could stop by to see Mom after work, I could go swimming with her at open swim times. The other best part; this facility seems to be very responsive to potential customers. My therapist's mom lives her and she has nothing but good things to say about this facility.My sister called the director of the other ALF this morning. She has not received a call back yet....

Life is Full of Disappointments

I am very disappointed. Yesterday I called the ALF and found out that the room which I thought had been earmarked for Mom, was actually not going to be vacated, and therefore available, after all. I really was bothered by the fact that no one bothered to call me about this, I only found out because I called them. This pisses me off and I've a tarnished view of this facility now. If they can't even get this right then how confident can I be that they will take good care of my Mom? Not to mention the fact that I passed on vacancies at two other facilities, confident that we had a room. Luckily, one of those rooms is still available. I had a gut feeling about not taking Mom off the waiting list at this other facility and it turns out that the feeling was right. So, tonight I am visiting another ALF to view an available room. It is extremely important to me that I have a good feeling about the place where Mom will live. Right now Sunrise has a lot to make up for in my eyes. And it's back to square one as far as the move is concerned.

Sunday, August 17, 2008

I think the antibiotics are helping alleviate some of Mom's confusion. She seems to be back to herself and has more interest in doing things. She's sleeping through the night too, which is good for both of us.

It was a beautiful day today so we sat outside and watched the WWII planes fly over (there was an airshow this weekend at a local airport). Those planes are LOUD! But it was fun to watch them fly.

I'm sad that summer is winding down. I know it's only August but already the sun is setting earlier in the evening and rising later in the morning. The Minnesota State Fair, which is a big deal around these parts, starts later this week. I haven't been to the fair in over 15 years. I just am not that into crowds.

Yesterday was my uncle's birthday. Happy Birthday! Lucky guy shares his birthday with Madonna.

Thursday, August 14, 2008

We've never used the 'A' word around Mom. She doesn't know that she has been diagnosed with Alzheimer's. At this point, I'm not sure that she would even grasp what that means. She just knows that she's no longer independent. She can't understand why she's incontinent. In the beginning she fought not being able to drive her car. I hid the keys during the day when I was at work. She would get angry, so very angry, at me about this. And it was so hard to disappoint my Mom (as a child it was the last thing I ever wanted to do). But it had to be done. The woman who could navigate better than anyone else I knew suddenly was getting lost and disoriented. Then we sold the car and she rarely asks about it now. One battle in the war that is Alzheimer's and the enemy was defeated. We also haven't told Mom that she is going to be moving to assisted living soon. The experts tell me that it is best not to do so. My sister has a friend who has volunteered to come out and help us take this difficult step. She's done this before. Neither of us is looking forward to this step. We know it's going to be painful for all involved. How can it not be? So on the appointed day we will somehow get things moved to Mom's new room, and then we will move Mom there. How we will do it is unknown. The facility should coach us. Once there, Mom will complain, express anger as only she can and basically just pitch a fit. Or maybe she will surprise us and accept her fate. My aunt let it slip to Mom that she is moving but luckily Mom didn't grasp what was said; she remains oblivious. Auntie was so upset, she thought she had blown it for sure. That's the thing about Alzheimer's; it's like a box of chocolates, you never know what you are going to get on any given day or in any given moment even. Mercurial doesn't even explain it.

Wednesday, August 13, 2008

Washing machine is broken (leaking). Toilet is plugged. No caregiver showed up this morning due to a scheduling mix-up. Mom has diarrhea from the antibiotic. Repair man can't fix washer until tomorrow. Send help! When it rains it pours.

Tuesday, August 12, 2008

Lily's calcium level is back to normal! Yay! We will continue to monitor it annually. I'm so relieved.

Mom is back on antibiotics. Yup, another UTI. I had to follow up with the clinic to find this out. No one ever contacted me after nearly a week. I was very angry and I let them know it.

Sunday, August 10, 2008

The weather is absolutely perfect today; sunny with a cool breeze blowing and low humidity. Mom and I sat outside for nearly 2 hours enjoying the weather and the company of our neighbors. Even Olivia came out in her kittywalk. I think Lily was jealous, so next time I need to make sure that Lily gets outside too. Yesterday was Lily's 9th birthday. She had to go have a blood test at the vet. We are monitoring her hypercalcemia. She was not happy about it. We've also started her on Cosequin for her joints. It's a glucosamine/chondroitin supplement that is sprinkled on the the food. She's been looking a little stiff lately. She's also lost a little weight which is hopefully from all the exercise that she gets playing with Olivia.

Getting Mom to and from the bathroom is really hard. She rarely makes it on time and she complains about how much it hurts to walk. I hope I can make it. Poor Mom has lost so much independence. I think I could deal if it was just the ALZ but throw in the inability to walk and the incontinence and it's pretty much impossible for me to care for her as well as she deserves. Betsy, I understand now why your well went dry. We are doing laundry on a daily basis, sometimes more than once in a day.

Tuesday, August 5, 2008

Smart Phone for a dumb user?

I finally gave in and upgraded to a smartphone. My Palm pilot, which I rely heavily on, died and I didn't have access to my contacts and appointments. I upgraded my cell phone to a Palm Centro which not only allows me to make phone calls, but also stores my contacts, appointments, memos and tasks. I can IM (instant message), browse the internet and a multitude of other things. Best of all I only have to carry one thing in order to do all of these things. The only thing I'm not too thrilled with is that the battery seems to need to be charged daily.

Mom is doing OK although she cries a lot. She knows something is up with her memory and it frustrates her that she can't do things like she used to. We had a really good weekend together though. Today she spent the afternoon with one of her favorite caregivers. They were laughing and chatting together when I came home. And our guardian angel Terri was with Mom in the morning. We are so blessed with the best caregivers in the world. I'm so grateful for each of them and they care that they give Mom. And me.

Our weather has taken a turn toward cool. It's still warm, it's just that the humidity has dropped to a tolerable level and a cool breeze is blowing. Our strawberry plants are thriving and we are getting more strawberries. The hydrangeas and gardenia are also doing well.

Saturday, August 2, 2008

Dog Days of Summer

Yesterday I was able to get a specimen from Mom so that she can be tested for a UTI. We are now waiting to hear if they found anything. Usually they call right away if the specimen tests positive so hopefully no news is good news. Keep your fingers crossed. Mom has been sleeping a lot today, though yesterday she was up and quite jovial throughout the day. There is just no planning with this disease. I was hoping we could get out and find new reading glasses for her, her's have been missing for a few days. We tore the house apart looking for them with no luck. She asks for them every day, several times per day. I've given her a pair that I use but I don't think they are magnified enough for her. Most days are tough, but some days are good. Yesterday was a good day.

Mom's sister is pretty freaked out about her sister's pending move. She knows that it's for the best but I know it's hard for her. It's hard for us all to see Mom like this.

I have been reading lot's of knitting books and I finished one of the fingerless gloves I had been making from Annie's yarn (which by the way is a pleasure to knit with). Next I need to get started on the mittens. I can't wait to start them. I found a book that has basic patterns for mittens, gloves, hats, tams, socks and sweaters which I hope to use.

Yesterday was also the anniversary of the bridge collapse. We've watched a little of the coverage which included a number of memorial services including one on the Stone Arch Bridge. Mom and I had gone out to dinner to Applebee's then to our favorite park. It was a beautiful evening. When we started to drive away the radio announcer relayed that the 35W Bridge had collapsed. It was unfathomable. We rushed home to watch the continuous coverage, dumbstruck. Many of the victims are still recovering. Many of the people who've lost loved ones will never be the same again.

Wednesday, July 30, 2008

Christian the Lion

This is such a heartwarming video. I had to share it! Enjoy.

Alzheimer's Sucks!

It looks like the room will be available for move-in in September. That will give my sister a chance to get my nephew off to college in August. Perhaps it will be just in time for the Republican National Convention. Mom is sometimes sleeping through the night. Last night she fell out of bed at 3:00AM and my saint of a neighbor Mary came over to help get her back into bed. I put the bed rail up when I got home from work. Hopefully this will be the last of the falls from bed.

Everyone tells me not to mention the impending move to Mom until the day she is dropped off. This is hard for me, but I will follow their advice. They tell me it is going to be hard, probably the hardest thing I will ever do, but it must be done. I hate this disease and the dignity and independence that it has robbed from my mom. She is in distress most of the time; weepy and crying, angry and depressed. And she has every right to be so. I only hope that she can find some peace and joy in her new surroundings.

I'm tired. I had kind of caught up on my sleep. I need a few good nights where I sleep through the night without any interuptions. And guess what? Mom is very incontinent so once again I am trying to get a urine sample. I have no time to pick up the supplies or collect the specimen and drop it off. I need a helper. Desperately. The only indication that it might be a UTI is the fact that she is soiling right through her Depends. Several times per day. Does that indicate a UTI?