Friday, February 29, 2008

Today Mom and I met with Nicole from Senior Abilities Unlimited. Nicole is a physical therapist who owns her own business. Her specialty is working with seniors including those with dementia, to help them keep moving and to create 'muscle memory' so that even though the brain might forget the muscles remember how to work. She was great with Mom, I was impressed. She got Mom up and walking and she observed her very closely as she walked. She observed that one of Mom's legs is shorter than the other, she recommended a lift in her shoe for this. I asked her why no one else had noticed this and she said it's most likely from her hip replacement surgery. She said that this explains why Mom's left hip is in so much pain , (it's been compensating) and also why her right ankle (remember that?) has been hurting. Nicole's services are private pay, but she came highly recommended so I think it's worthwhile to try her out and she what she can do for Mom. She would come twice a week and work with Mom for 45 minutes each day. Mom was feisty, but Nicole had a knack for getting Mom to do what she wanted her to do. Afterward Mom said she liked Nicole. I guess we will give it a try.

Thursday, February 28, 2008

Today when I called Mom she was angry at me for not being home with her. Terri was there though and she left a note that said she and Mom had a really good morning together and that makes me feel better. It's hard to remember sometimes that this anger, though directed at me, is not really something that Mom has control over. I shouldn't take it personally. But I still feel like I've disappointed her somehow. Alysha got Mom to the bathroom this afternoon which is a good thing!

We are having snow and it took an extra hour to get home tonight. It was very slow going. Mom was a little worried, but at least she wasn't crying. I worry about her if I'm late, because I know she she gets confused. Tonight she was thinking that she could use her crayons for brushing her teeth. I think we are rapidly approaching the time when she puts things in her mouth. I keep remembering Annie's mom and the quarter that she swallowed so I am vigilant as I can be about things that can go in the mouth.

I talked to Mom's financial broker today. He was very sad about her decline. He's known Mom and Dad a long time so watching them both go through their illnesses has been difficult. Alzheimer's sucks so much. I hope they find a cure soon. It will probably be too late for Mom but I hope that they can stop it so that families don't have to suffer through this like me and my caregiver friends.

Finally got Mom in bed and sleeping. She jerks a lot and talks in her sleep. She was talking about weird stuff. Is this typical for people with ALZ?

Wednesday, February 27, 2008

Today the facility that is closest to our house called today. They have an apartment available, with two bedrooms. Much too big and expensive for our needs, though it does look very nice. It has a porch too! However, I told them we were going to pass.

Mom is in a great mood today. We had upped her antidepressant about 2 weeks ago so I wonder if it is helping. She seems to be having a lot less tearfulness. I really don't like medication but if it helps her quality of life then it's OK. She is even showing more interest in doing things outside the house. I don't know if we can chalk that up to more sunshine and daylight or the medication or maybe both.

Tuesday, February 26, 2008

Mom has a young woman who is her caregiver on Tuesday afternoons. Mom loves her. And she tells her so! I am able to see them interact as Nicole usually stays until 5:30. They seem to have a great time together. Mom was chewing gum because she saw Nicole chewing gum and wanted some, so Nicole gave her a piece. I'm so glad that Mom enjoys her afternoons with Nicole. I'd like to have her come more often but she is a student and has school in the mornings.
Did you know?

Sunday, February 24, 2008

Mom and I have the iPod on shuffle. We are shuffling through the pop genre. Right now we are listening to the Carpenters ('memba them??). Karen Carpenter had the most amazing voice. What talent they both have/had. We grew up listening to them in the '60s and '70s. Both Mom and Dad liked to listen to music. I know one of them liked Tom Jones, I'm not sure which one though. Anyway, the pop shuffle has some ABBA, Manilow, Tony Bennett, Johnny Mathis, Perry Como, Rosemary Clooney and Barbra Streisand. Mom seems to connect to these artists, perhaps there is some memory of them? What a great way to spend an afternoon. And it's 40F! Woo hoo!

I continue to struggle with the idea of relocating Mom to an ALF. I hope that she doesn't feel that I am betraying her or dumping her some place. But I just can't do this anymore. I think she would relate, after all she moved my dad to the hospital days before he passed because she couldn't deal with it anymore. We used to visit my dad's youth director at her ALF place and Mom would say she wouldn't ever want to live in such a place. It was a high rise, retirement community. Very nice. I don't know what problems she had with it. Oh well, I don't think she would want me to kill myself caring for her either. So my dilemma continues. It's not like I'm dumping her some place bad; it's a nice place! I'd live there! In fact, maybe I WILL move there...Mom can stay here.

Saturday, February 23, 2008

Today after breakfast Mom and I worked the puzzles that I made yesterday for her joy kit. I was impressed by how well she was able to do them. It made for some great one-on-one time for us. I bought some flat foam sheets and glued pictures from an old calendar on them. Then I cut the pictures into puzzle pieces. These joy kits would be a great service project for a girl scout troop I think! I ordered some wooden beads from that I will put into the joy kit. I had bought some plastic beads yesterday but I'm not too thrilled with them. I need to purchase some modeling clay too. I think Mom would like that. Mom has always been very into crafts her whole life (she knitted, crocheted, made stuff for craft shows including jewelry, she painted and so many other things that I can't remember) so I think she will enjoy these things. And she and I did a lot of these things together so it's good for both of us. I bought a cardboard box for storing photos in a pretty color and I put foam letters on it to label it "Joy Kit". Then I put the instructions from the website into the box. I hope that it will allow Mom's caregivers to spend some quality time with her while I'm at work. Speaking of Mom's caregivers, yesterday Mom said she likes having them visit with her; she doesn't like to be alone. In a few months we have come so far.

Friday, February 22, 2008

This afternoon I met with the Geriatric Care Manager. Mom LOVED her! I'm not sure what it was that she liked about her, but she has commented several times about how much she liked her. She said she 'looks like us'. Not sure what that means. I think I would definitely utilize a care manager as we approach moving Mom to a facility and even once she is in the facility. The care manager had positive things to say about all 3 facilities that we have chosen so that is good.

Yesterday I learned about something called a Joy Kit that is used to stimulate memories for the ALZ patient and allows someone to spend quality one on one time with the person who has memory loss. It is broken down by disease stage. I was quite impressed by it and am going to try to put some together for Mom. I stopped by Michaels after my therapist appointment and picked up some beads for stringing, some foam backing for making puzzles and some coloring books.

The sun is out and the temperature is 22F. Yay.

Thursday, February 21, 2008

Check out the story of Wind Chill, a colt that was left outside in freezing temperatures. He nearly didn't survive. It sounds like he was bullied by the other horses where he was being boarded and not allowed to eat. Poor baby! I'd never heard of this kind of horse. He sure is cute!

Wednesday, February 20, 2008

The vacancy at the memory care facility is a companion suite which means Mom would be sharing space with someone else. Mom definitely would not go for that, so I will be passing on it. The room has a southern exposure which would be really nice, but I'm going to have enough problems convincing her this is a good move without the burden of losing some of her privacy.

Today Mom had a different caregiver in the afternoon and she was very upset about it at first. But she settled down. And the caregiver seemed to be very understanding about it, stressing that it's the disease. It's got to be especially hard for Mom to have strangers show up at her house and try to tell her to use the bathroom and stuff. This disease is hell.

Tonight we are watching the lunar eclipse. We have top down shades and I pulled the shade down so Mom can see it. She seems to think it's pretty cool, which it is.

Here is another video from youtube. It's Nora the piano playing cat! I love this. This is actually a sequel to a previous video. I love this cat. Enjoy!

Tuesday, February 19, 2008

One thing that the lawyer suggested that we look into is a geriatric care manager. Today I talked to two different agencies. They can act as an advocate for Mom in all aspects of her care. One agency is called Rent A Daughter. Boy I could have used something like that 3 years ago.

Today, one of the memory care facilities called to say that they will have a vacancy in 30 days. I was very unprepared for this but I still had enough faculties to ask if I could think about it. Then I called my sister. She suggested that I visit the facility to see the suite that is available. This particular facility is approximately 9 miles from my home; it's the one that is the furthest from our home in fact.

Mom's usual caregivers were not available today so we had substitutes. I don't think she was given breakfast and they didn't give her her morning pills. I don't think she had much at all to eat today so I added a note to her care plan about making sure that she has breakfast, lunch and her pills.

I'm finally feeling close to 100% again. The antibiotics must have kicked in. Yay. It's still cold here. I'm so over it. Bring on spring.

Monday, February 18, 2008

Today I spent 2 1/2 hours meeting with an attorney who specializes in elder law. My sister joined in via conference call. Needless to say that we were both overwhelmed. The lawyer had so much information to give us including info about trusts, geriatric care managers and assisted living contracts. She even talked about how I should handle having POA. This is daunting stuff to say the least. I'm glad that my sister was there as a second set of ears. I don't think either of us expected the meeting to be so long. But I'm glad that I went. This lawyer came highly recommended so I was quite pleased by her thoroughness.

Sunday, February 17, 2008

Mom and I had such a good day yesterday. She was almost like 'herself' (non-AD-like). The sun was shining and we listened to The Nutcracker and The Most Uplifting Classical Music Ever. It was a lovely day. We had spaghetti for dinner and then we watched one of our favorite movies On Golden Pond. Mom watched the entire movie and followed the plot. Of course it started the where's-my-husband-what-happened-to-him conversation. She knew he was dead so there was no tricking her with 'he's not here right now'. Today it's back to being cloudy but still close to 30F.

Saturday, February 16, 2008

The doctor has put me on antibiotics and given me an inhaler to use twice a day. The antibiotics are the kind that you take for 5 days but they work for longer. I have had a low-grade fever and still had it yesterday. She heard some crackling in my lungs too. I told her that the wheezing was much better; I no longer sounded like Chewbacca when I breathed out. She laughed. Then she asked how my mom is doing and I lost it. I told her I was on the wait list for 3 facilities and I cried. She gave me a big hug and told me to take care of myself. She knows how difficult the last 3 years have been. When I told my therapist that we had moved Mom to the active list she was only slightly surprised but mostly relieved for me. She too knows how tough this has been for me. This is the most difficult thing I've ever done in my life other than watching my dad succumb to cancer and my sister deal with the pain of her horrible separation. Everyone seems convinced that this is a good decision for both of us. I'm mostly convinced. That doesn't make it any easier though. But now it's in God's hands. I secretly hope that the one with the pool is the facility where Mom ends up. I think she would really enjoy that once she got over the shock and anger and feelings of abandonment. My therapist said after three years of working full time and caring for Mom full time it's time for a break. Looking back (hindsight is 20/20 right?) Mom should have probably moved to assisted living rather than in with me. But it's over and done with and I guess it's good because we've saved that money. Maybe I could move to assisted living too? LOL.

Thursday, February 14, 2008

I am beginning to feel better. I stayed home again today and slept until 2:00. Mom's caregivers did a great job with her today. And Mom is cooperating too. Last week we upped her antidepressant and it seems to be helping her mood, but she's also been having episodes of agitation which might be from the higher dosage. She was very upset this afternoon when I woke up, I think because she was worried about me. She kept asking for me and she was crying. Once she saw me though she calmed down. I suggested that she play the piano for Alysha her caregiver and she did. Now that's something more that the two of them can do. Mom remembers her scales and plays those. She's really good. She can't read music anymore nor does she remember the one song she used to play from heart. It's pretty amazing what she remembers.

Wednesday, February 13, 2008

I'm very scared about change, especially where Mom and I are concerned. I know I'm starting to lose it but I don't want to face the inevitable. My family is so important to me. Once I lose Mom I'm afraid that I will be lost. I love her so much. I can't imagine my life without her. It was hard enough to lose my dad, he and I were very close. Mom has been my best friend for so long. It hurts not being able to share everything with her, ask her for advice and just do what mothers and daughters do together. It is so hard watching this awful disease steal our mother away. This house is going to be lonely when she moves out. I need my sister and brother.

I still have my cold and cough. I felt awful this morning and stayed home. They must think I'm a total slacker at work. I have a doctor's appointment on Friday. It's hard to fall asleep at night with the wheezing.

Monday, February 11, 2008

Here is the latest picture of Mom, taken on Sunday. Her new perm looks great, and she enjoys looking at herself in the mirror and checking it out. Tonight she is wide awake so I thought I would blog. Would you suspect that this sweet face would be such a pain the the you-know-what tonight? She's been doing the 'I want to get up --I want to go to bed thing' tonight. Luckily I got a good night's rest last night so I'm not exhausted tonight.

My cold has settled into my chest and I have a wonderful cough. Otherwise I feel OK. I'm still wheezing. Tonight Mom asked what that noise was. It was me wheezing. It only seems to be bad when I lie down.

I am over this cold weather and ready for spring.

I have emailed the 3 memory care facilities and let them know that I am close to ready. I've heard from one. So tomorrow I'm going to call them. This is going to be the hardest decision I've ever had to make so I hope that I get help from my family on this. It shouldn't be just me, though I'm the one who is living it every day so I guess it has to be me and me alone.

Sunday, February 10, 2008

This is the beautiful yarn that Annie sent me. I still can't believe that she gathered, spun, dyed and everything else involved, this beautiful stuff. She does amazing work. I am making a pair of wristlets out of this lovely yarn and will post a picture when finished. I love this color too. In the meantime, if you knit, you've got to try some of Annie's yarn. It rocks!

I'm still not feeling better. I'm not wheezing very much though. And I'm trying to avoid giving it to Mom by not hanging out with her. That doesn't always go well because she likes me to be with her at all times.

The sun is out but it is cold.. -7. Thanks for rubbing in the 70 degree weather in Austin Rick. I hope you had fun swimming. This summer when you are sweltering, we will be too. And it will be unbearably humid with giant mosquitoes attacking us. Minnesota...the land of fire and ice.

Saturday, February 9, 2008

I convinced Mom to take a shower today! YAY! Well, actually it wasn't so much convinced as coaxed. You'd think I was asking her to participate in the Bataan death march (apologies to anyone who did or knew someone who did, it was beyond comprehension) and who knows, maybe in her mind that is what it is like. I hate this disease.

After nearly 16 years with asthma I didn't think anything could freak me out. Last night I experienced wheezing for the first time. I never realized what it sounded like so I googled it and heard an actual recording of wheezing in the chest. I am coming down with a cold thanks to someone at work who has been coughing nonstop for at least a week. Not that I'm blaming him, I'm pretty run down from caring for Mom so I'm susceptible to just about everything. I broke out the neti pot last night and the Zicam. I have the aches and my asthma is bad.

Friday, February 8, 2008

It's snowing here today, but we are not supposed to get very much snow. Not like what Milwaukee and Madison got earlier this week (are you dug out yet Nancy?). We are supposed to have arctic cold on Saturday and Sunday. Yay, my favorite -- NOT!

Mom slept until 7:30 this morning. Meanwhile I feel like I'm catching a cold so I broke out the Zicam. Seems like everywhere I go someone is sick so I guess it's inevitable if I'm catching something. Hopefully I can head it off with Zicam and my neti pot. Have I ever mentioned my neti pot? I love it. It has really helped me avoid sinus problems and controls my allergies pretty well. Before I started using it I had a sinus infection every winter. Now I haven't had one in years! That alone is worth the cost of using this pot. The process is kind of gross, but once you get used to it you realize that pouring water into one nostril and out the other is not going to drown you.

Thursday, February 7, 2008

This article was written by a newspaper reporter dealing with the diagnosis of Alzheimer's for both of her parents. It is so good. I highly recommend reading it.

Wednesday, February 6, 2008

I need advice. What should I do on nights like tonight when Mom wants to go to bed, then when she gets into bed she wants to get up. When she's up she complains that I 'made her get up' when she really wanted to go to bed. She's calling for me, do I go up to her or, like with a child, do I listen and hope that she will calm down and go to sleep? I've been running myself ragged being at her beck and call. 'I'm thirsty'. 'I want to get up'. 'I want to go to bed'. How have others handled this? She's been quiet for half an hour now, maybe the wait it out approach will work after all. I know my friends will have good advice for me. I'm so grateful for you all!

Lily's blood work came back. She does not have hyperparathyroidism. This is good news on many levels as she would be thoroughly traumatized by a trip to the University Vet Clinic. She's already done that and she was a basket case. She has irritable bowel disease and she had to have a colonoscopy to diagnose her. It was terrible for all of us. Mom was worried too because they thought it might be cancer but it was not. Thank God. We are going to continue to monitor her calcium level though via periodic blood tests.

Tuesday, February 5, 2008

Your child is sick, maybe with a cold or the flu. You feel utterly helpless as your child suffers; you would give anything to make it all better. In a day or two, all is better. Now, imagine if this dragged on for years, getting worse and worse with every passing day. This is what it is like to have a parent with Alzheimer's; descending steadily into oblivion, robbed of the very things that make them who they are; their memories. With Alzheimer's there is no getting better in a day or two, things only get worse, much worse. There is a loss of independence and dignity. Suddenly they have regressed into a weird second childhood, only this one is not a trip to the fountain of youth. All you can do is stand by watching helplessly as your loved one hallucinates or tries to express themselves with communication skills that have gone haywire. Worse is yet to come. This is what it is like to be the caregiver of a loved one with Alzheimer's. This is hell.

If you know someone who is caring for a loved one with Alzheimer's reach out to them and let them know you care. You can't catch Alzheimer's from someone who has it. But you can make a difference in the life of someone.

Monday, February 4, 2008

The afternoon caregiver left a note that said Mom's blood draw went fine. Whew. The results were ready by the time I arrived home. Mom was even in a good mood all day even though the morning caregiver didn't give Mom her pills. The usual morning caregiver is on vacation this week so we have Marie filling in. I left a note about that for tomorrow. Most days Mom seems to get along with the caregivers pretty well. She was upset when I came home today because she had had an accident and was soaked. She feels that she has done something bad when this happens, I feel that stems from her childhood. I know that both caregivers try to get Mom to use the bathroom but she refuses. It's that privacy thing.

I was able to scrapbook yesterday, finally. I finished about 6 pages. Mom even sat at the table and colored while I did this.

Sunday, February 3, 2008

Every year for at least the last 10 I have gotten Mom a 'Watch 'Em Grow' garden. It's basically a bunch of springtime bulbs (daffodils, tulips, hyacinths and crocus) in a container. It's wonderful to watch the bulbs as they grow and flower. It's a beautiful sight. The daffodils are already starting to flower. The only problem that I have is that the leaves and flowers get so leggy and end up drooping all over. Mine never looks as good as the picture on the left.

Last night I started on my sister's wedding scrapbook, finally. I have a new Photosmart printer that does an awesome job of printing out the photos. I've enlarged several so that I can include them in the album. I've also taken a few that didn't turn out so well and enhanced them so that they can be included too. I just haven't felt very motivated to work on this, maybe because I'm afraid of it not turning out nice. That and the fact that Mom never lets me too far out of her sight. My sister suggested that I bring stuff upstairs so that Mom can help or just watch me work on it. I might try that. In the meantime I've been knitting and I am more relaxed.

Mom has been coloring non-stop as usual. Last night she was going through her old coloring books and filling in areas she had previously not colored. I also bought her a bunch of new books, none of them Scooby Doo. She didn't like the Scooby Doo one. She likes the princesses and Disney ones best.

The sun is trying to peak out. We received a light dusting of snow overnight. I'm ready for spring, or at least some warmer, sunnier weather.

Friday, February 1, 2008

I'm exhausted and achy. I've been clenching my jaw so hard that it hurts and I can't seem to get myself to stop it.

I'm participating in a study at the University of MN for adult children who are caregivers for their parent with Alzheimer's. Today marked one year of participation for me. I met with the study director and filled out a survey. The study participants are broken down into two groups; one group, that I'm in, receives comprehensive care, meaning they have the ability to meet with and get support from a counselor. The other group does not receive this care. They are trying to see if providing support for the caregiver helps cut down on stress and depression. I admit, that recently I haven't utilized the counselor as much as I should.

Mom was whiny and refused to leave the house for her protime today. So I decided to call the clinic and see if they offer home blood draws. They do not but they gave me the names of some services that do so I called a few of them and chose one who seemed to be pretty good. She said she will be here around 12:30 on Monday. I can't remember if the caregiver will be here also at that time. Of course none of this is covered by Medicare and Mom is concerned about the cost. I on the other hand, am tired of struggling to get Mom out of the house to get this done and it's too important to ignore. God, I hate this disease so much. I feel so bad for her because she would not want to be this way at all. It's an awful loss of dignity. And it sucks.

On a happy note, I have some gorgeous alpaca yarn from Annie to knit some new wristlets. I jumped right in and began knitting tonight. I love this yarn! It's a gorgeous shade of purple from Peach Boy. Thank you Annie! It's a dream to knit with. Knitting relaxing me, so maybe this will help with the tension I've been having in my neck, shoulders and jaw.

Nine Years and Counting

Mom has been gone for a little over nine years. This blog was a huge mechanism for helping me cope with her illness and daily downfall. I...