No news is good news, sort of

There really hasn't been much going on. As I mentioned in my last post, I had an aide come so I could sleep. It was wonderful, but short lived. I ended up letting the aide go because her snoring kept me and Grandma awake. Yep, she was sleeping on the job. So much so, that once Grandma had to buzz for me to take her to the bathroom because the woman couldn't hear her over her own snoring. Anyway, Grandma is on Enablex now and doing much better. We usually only get up once or twice a night.
In the last month, she has started to have tremors in her left arm. Besides being frustrating for her, it also reminds her of the progressive nature of this disease. It used to only be her leg, occasionally.
Lately, she'd been asking me when she was going to get better. I don't think that she wanted to grasp that she wasn't. I tried to gently remind her that the doctors said she probably wouldn't. Still, when we went back the the Center for Senior Health this week she asked the doctor. He was very careful with the words he chose, but told her the truth. Have I mentioned that I love this place. Everyone that we encounter is so caring and sensitive. It's like getting a big hug. She handled the news well, but was obviously upset about it. She hates being a burden and knows that there is nothing she can do to stop it.
Her collarbone healed up wonderfully. She had no loss of motion. It's quite amazing considering the severity of the break and her age. She "graduated" from physical and occupational therapy. They played it off as a good thing, but really there is nothing else they can do for her. Her balance continues to get worse and she's not progressing in therapy. There has been no improvement in a month. Unfortunately, Medicare will not pay to keep her at the same level. So, now we have to work harder at home. One more thing to fit into a very busy day.
It's never ending really.
I have to plan her meals more carefully now because she's losing weight. I also have to fit in more fiber because she's constantly constipated. Don't forget the additional fluids to try and ward off UTIs. Which means more frequent trips to the bathroom. Caring for Grandma really is a full time job. Unfortunately, I have other responsibilities too. Ya know, a family, pets, church...trying to fit in a shower occasionally!!!
I have learned that time management is my greatest help. Lowering expectations helps a lot too. This is why I don't post here very often. I spend very little time on the computer these days.
Still, we are preparing for the holidays. Grandma really seems to enjoy being apart of that chaos. We've decorated the tree. The kids made a gingerbread house. Soon we'll bake cookies. We're also planning a trip to go look at the Christmas lights nearby. I think she'll really enjoy that! All in all, I know her quality of life is improved tremendously by living with us. I wish I could say the same for ours.
The other day a lady at church mentioned what a sacrifice it must be having her with us. She was the first to acknowledge that out loud to me. I realized...yes, it's a huge sacrifice!! Thanks for noticing. Everyday we give up some little pleasure for her. This coming week, I can't go to my DH company party because I have no one to stay with Grandma. The kids are missing youth group because my sister is on vacation and she usually stays with her. We have no spontaneity when she's here. It's such a chore to go anywhere with her, it's frequently not worth it. Or, we have to consider if she'll be able to manage. Outdoor markets and fairs definitely are not feasible. We've learned through trial and error what she can manage and what she can't. But it changes. Soon things that she can do today will no longer be possible.
Anyway, we're managing!! Getting through each day. Usually they are ok, sometimes really good. The bad days are really bad, but not too often.

The Cavalry is Coming!!!

Today, tonight to be exact, a home health aid is coming. She will be staying from 11pm-5am!! I have the opportunity to get my first full night of sleep in over a month. I am giddy. After weeks of trying to muddle through, I decided to stop playing the martyr and get some help. I am exhausted.
I took Grandma to the Summa Center for Senior Health on Friday. This place is a Godsend. It's just what we needed. They did a very thorough evaluation. Asked us tons of questions, both together and separately to really see what our needs are. They work to not only take care of the patient, but also the caregiver. It was so nice to feel cared for! They also reassured me that I'm doing everything that I can, with one exception. "You're not taking care of the caregiver", said the social worker. She was the one who really encouraged me to get some help at night.
I resisted at first, but she gently reminded me that if I don't care for myself there won't be anyone to care for Grandma or my family. Plus, I've been pretty cranky.
The Center works to bring all of Grandma's health concerns to one place. They have a team that works together to manage her care, both physically and emotionally. They work with the family as a whole because they understand how important it is to have everyone informed. It was the first time I've felt really comfortable with her care. I was able to ask all my questions and voice all my concerns without feeling stupid of judged. I wanted to hug them all as we left. Oh, BTW, it was a 2.5 hour appointment. I said it was thorough.
Grandma has been managing without her sling. Her collarbone doesn't seem to bother her at all. We have another check up on Monday then she should be able to start physical therapy on it.
An interesting thing that I learned was that people with dementia can have a hard time expressing pain and it can show up in odd ways, i.e. hallucinations. The doctor put her on Tylenol for the next two weeks to help deal with the cracked ribs. She has been functioning much better. There is so much to learn!!

Not-so Brief update

I say "not-so brief, because so much has happened since my last post that even just an update can't be brief.
Here goes, we learned that with PSP Gma is losing her vision. Not because of her eyes, but because of their inability to work together.
She fell while getting into her chair, fracturing her clavicle. She's been in a sling for 3 weeks now. This means that she can't do anything on her own. Including bathrooming. So, every few hours, I have to take her. I haven't had a good nights sleep in ages!! This has left me exhausted and sometimes very cranky.
Before her accident, I was looking into adult day care. This has been my sanity the last 3 weeks. It's absolutely wonderful. Gma gets to interact with other people, has different activities each day, healthy meals, and a nurse available. The staff at the center has been tremendously helpful. They offer advice in how to handle certain situations. Most importantly, it allows me time to myself and with my family. I can't say enough great things about it.
After her injury, the very well meaning doctor put her on Darvaset. This was very, very bad. The medication made Gma "bonkers". She was off balance, hard to understand, even harder for her to understand us. I only kept her on this med for a few days and then switched her to OTC meds.
She has also started hallucinating. This is common with psp and dementia. So far, they have been "friendly" although very confusing for her. It's hard to explain to her that someone she's positive she saw, wasn't really there.
After all this, she fell again!! This time she seems to have bruised her ribs. She's very uncomfortable again. I took her for x-rays and they aren't broken, but there's really nothing that can be done. We ice it frequently.
I know more has happened, but I'm too tired to remember it. Overall, things are ok. It's been much harder than I expected. I had no idea she'd go downhill so quickly. It took me awhile to realize that I was trying to do this in my own strength. I'm just not strong enough. I don't have enough patience. I have learned to pray daily that I the Lord would meet her needs through me. I know I can't keep her in a bubble but I try to keep things as safe as possible. Still I feel guilty when she gets hurt. I forget sometimes that she is still an adult and she makes her own decisions. Unfortunately, she is unable to understand her limitations. It makes each day interesting.

It's official

Another week of doctor visits and therapy. We saw the Movement Disorders specialist this week. He agreed with the previous neurologist that Grandma has PSP. With this visit came the realization, to her, that this is not a better diagnosis that PD. Up until this point she seemed to think that PD was about as bad as it could get. Unfortunately, PSP progresses faster and doesn't have medications that help. So, the doctor took her off of the Parkinson's meds she was put on last month and is putting her on an anti depressant. I was really happy about both of these things. I really think she needs the anti depressant, but didn't want to bring it up.
On the way home from the doctors, she and I had a serious conversation about what she wants for the future. After our talk with the Dr. it became clear that if we don't discuss these things soon, she won't be able to. Eventually this disease will take from her the ability to control all her basic functions. We have decided that she will continue to live with us as long as I can care for her. She understands(as best she can) that eventually her needs will surpass my abilities. At this point she has asked me to find an appropriate nursing home, close to our home, for her. This was a horrible conversation to have. She is petrified of what is going to happen to her. I can't imagine what that would be like.
For now, we are continuing with life "as usual". She is going to continue PT/OT as long as her insurance will cover it. Although she may never see an actual improvement, it may help slow the progression down a little. Even a little bit is better than nothing. In a few weeks, once the shock of this news is a little less fresh, I will start looking into nursing homes. I want to be prepared when the time comes that we need to make a change. I hope this is years down the road, but I don't want to wait to find out.
I'm having an easier time dealing with the every day interactions. I definitely think taking the time to exercise is helping. I haven't quite met my 5x/week goal yet. I find that reminding myself that she's not intentionally doing things to annoy me is helpful. I'm also adjusting to repeating the same information over and over.
We are discussing getting Grandma a pet. Probably an older small dog or cat. I think she would enjoy having something to dote on and care for as best she can. I have to keep in mind that whatever we choose, in the long run, I'll be caring for it. So, I'm thinking long and hard about whether I really want that added responsibility. At this point, if I honestly believe she'll enjoy it, I'll end up getting it for her. There are so few things she truly enjoys right now, I'd love to provide that for her.

New diagnosis and other info

It's been a busy couple of weeks. I have had an appointment for Grandma nearly every day. She has started physical therapy, occupational therapy, has had blood work done, met with the geriatric specialist and the neurologist. Here's what I've learned. If it looks like Parkinson's and Alzheimer's, has all the symptoms of both, it still may not be either. Today's doc thinks she has PSP aka progressive supra nuclear palsy.Although very similar to the previously mentioned diseases, it doesn't respond to the same treatments. So, now we're seeing a "Movement Disorder" specialist at the Cleveland Clinic. This is quite a drive, so hopefully we won't have to go frequently.
I also learned that Gma's vision problems aren't from her actual eyes. This is kind of hard to explain, but her eyes see 20/20. However, because of neurological problems, she can't focus them to actually see clearly. Now in addition to her physical therapy exercises, we have to do eye coordination exercises. She will be seeing a neurological opthomologist in a few weeks.
Also, since the geriatric specialist took her off the extra blood pressure meds, she hasn't been falling. This is a huge relief, although I still have to really watch her. I'm very hopeful that in a few weeks we'll start seeing some improvement and she'll be able to engage in more activities.
On a personal level, I have committed to working out 5 days a week. I've found this is very helpful to my sanity. When I start to lose patience, I walk away. I really have to watch my tone. Although, Gma seems really out of it sometimes, she really picks up on my tones. She says she's happy being here, but it's really hard to tell.
I guess only time will tell

One week down

We passed the one week mark and we're all still functional. We've had mostly good days. Grandma has had a few falls, but nothing terrible. She drives me a little crazy sometimes, but I'm trying to work through it. I find it frustrating that she is frequently wrong about things and can't be convinced otherwise. Once she has an idea in her head, it's stuck. I'm really trying hard to just let these things go, if they aren't important. It's more challenging than I would have expected. I always knew I like to be right, but I didn't realize how much. :)
The nurse came for the first time on Friday. It was nice to be able to come and go as I wanted. No lugging the walker or worrying about Grandma falling. Grandma was confused as to why the nurse was here. I've told her many times, but that doesn't always help. The nurse was ok. I wasn't thrilled, but I think she will be fine for our needs. She talked Grandma's ear off, which was amusing.
My greatest annoyance today was her need to chat. Although I love to talk, even I need a break. She prattled on endlessly about whatever came to her head. This would be a little less annoying if it all made sense, but it doesn't. Interestingly, this was the same thing that made me crazy when dealing with my mom when she had a brain tumor. I don't know what it is about dementia that makes people so dang talkative. This is definitely something that I'm going to have to work on either dealing with, or tuning out.
The last two days, Grandma has had accidents. This is nasty. I'm not sure I'll ever adjust to that job. I try really hard not to make a big deal out if, because I know she already feels bad, but eeeewwww!!! Clorox wipes are my new favorite thing!! How sad!
The one tip I have this week is Vitamin Water!! Grandma doesn't drink enough and she will not drink plain water. However, she will drink any flavor of VW. I love it too, so we're buying it by the case now.(I don't give her anything with guarana) Even if she drinks a bottle a day, it's only $25 a month. Way less than UTI meds and less gross to deal with.
I learned how to put hearing aids in this week. It's very easy, which makes it a little nuts that she refused to wear them. Oh well. I put them in as soon as she's done in the shower. A little less yelling is a good thing.

Today has been quite an eventful day with Grandma. To start, she fell in the bathroom today and pulled down the shower rod and curtains. She managed to damage the wall that is less than a week old. Then to top that off, she decided to come upstairs without using the stair lift. She says it wouldn't work, but she didn't have it turned the right way. SO, she CRAWLED up the stairs and proceeded to trip at the top while trying to get up. Thank God she didn't fall back down the stairs!! She doesn't appear to be any worse for the tumbles.
I gave her a good firm talking to. The really frustrating thing is that we have a buzzer that she can press to call me for assistance. Or she could have called up stairs. She chose not to do any of those things. I guess that's dementia. If it made sense, it wouldn't be so annoying.
She was mad at me today because I didn't take her to the bank. It doesn't sound like a big deal, but Grandma wants things done on her time schedule. Even if she has the wrong day, she still wants it done then!!
I had anticipated this being an adjustment, but I wasn't prepared for this. I feel completely incapable of dealing with her. My goal in moving her here was to provide a safe, stable environment surrounded by people that love her. I wanted to have her more engaged in what is going on, not just the game show network. I'm really hoping that having the nurse coming on Friday will help. Not just for the break, but also to have a professional to help me learn how to do this.
I hope to find some good resources online, and then I'll share them here. I'd love comments from others that have gone through, or are going through this situation.

Tired and Cranky

ME...that is. After several days of going,going..I'm now gone. I'm tired and crabby. I'm planning to get to bed as soon as "Hell's Kitchen" is over. Tomorrow, I take Grandma to the hearing aid place so I can learn how to put them in. She's had these aids for several years and doesn't wear them. It's really annoying to have to yell all the time and still she doesn't understand. Hopefully, this will help.
The consultant came today to evaluate Grandma's apartment. He was very pleased. He did offer some good suggestions, though. He has a device that will help her get in and out of the car. One to raise her seat so that it's easier for her to get up. Then, of course, the grab bars. It will end up costing a couple hundred dollars, but I think it'll be well worth it. Especially if I don't have to trade in my car for a mini van. :)
The director of the healthcare company, Jodi,came today. We went over Grandma's needs and my expectations. It sounds very promising. I'm really looking forward to meeting Grandma's nurse. We set up a schedule for the month. This is a relief because it guarantees I get some time away. So far, I've been here every waking moment.
Today, probably because I'm crabby, little things really annoyed me. For example, Grandma was picking at her fingernails. This drives me insane. Not just when she does it, in general. So, hopefully a good nights rest, and maybe some medication, will improve my mood for tomorrow.

An ordinary day, I guess

Today, I slept. After a crazy couple of weeks, I'm exhausted. Today we settled into a nice rhythm of Grandma time & no-Grandma time. She alternated every few hours between her suite and the rest of the house with us. She spent a few hours on the porch spying on the neighbors. This is one of my favorite pasttimes too. (not really spying, just observing. :)
She's not eating much, but I think that's because she got used to the painfully small portions at the nursing home. Not to mention, gross food.
She thoroughly enjoys watching the antics of kids and animals alike. It's nice to see her so engaged. At the center, she would sit for hours and watch game shows. She really didn't interact with people very much. This was one of the main reasons I brought her to live with us. It seemed as though she was fading quickly. I'm hoping that being in a more lively environment will be catchy.
Tomorrow I have a consultant coming over to see how safe our home is for her. He will also make suggestions to improve the situation for Grandma. In the afternoon, the director of the home health care is coming to access Grandm's needs so they can match her with the right nurses aid. We plan to have the NA here at least once a week.

Grandma moved in

What a day!! First off, I didn't go to bed until 2am, then woke at 7am. There were last minute paint touch ups to do and a little cleaning. I was already exhausted when I met my brother to pick up the truck.
This in itself was a bit of an adventure. You see, I had made a reservation online, thinking this would ensure that I had a truck for the move. Oh, silly me!! Nope, it means I'm "on call" for an available truck in the area. Since that really didn't work for me, I scrambled to come up with a real reservation. Anyway, I ended up with a pick up truck and trailer. This wasn't ideal, but better than nothing. For the record, Uhaul still hasn't called me to let me know I have a truck available.
After several grueling hours, we arrived home. Grandma seems pleased with her new suite. I'm pleased to have most of the work done. We soon discovered that our home isn't as walker friendly as we thought. Within an hour of arriving, I had to rearrange the dining room, move the trash can and warn the kids to stop leaving their shoes out.
As I type, she's having a "slumber party" with my kids. Her nails are painted the brightest pink I've ever seen. She's watching "Kim Possible". Hopefully, she's enjoying herself. She definitely likes my bunny and the cat. This is ironic, because she always claims to dislike animals.
Well, I'm really tired. Stay tuned, I have a feeling life is just starting to get interesting. :)