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


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 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.

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...