Do I need to change the name??

Here's the big news. Grandma moved out!!! I found her a lovely personalized, assisted living facility one mile away from my house. Literally, I measured. It smells like cookies as you walk in the door. That's really what sold me on it. Well, that and the actual taste of the cookies. Just kidding, sort of.
Seriously, it came highly recommended by Grandma's doctor. Everyone there seems nice and the residents seems quite comfy. It all fell together quickly and perfectly. I hadn't slept well in ages. I was turning into a zombie. Grandma suffered from pneumonia the end of March. It was terribly scary. I brought in extra help so she had care around the clock. Still, I worried constantly.
SSSSoooo, per the advice of her doctors, and mine. We made the move. So far, I'd say it's going really well. There have been a few minor falls as she was getting used to the new surroundings. I've forgotten a few appointments, but nothing too important. Best of all, I've slept like a rock every night since she moved out. Seriously, I've never slept this good. I feel like I've woken from a coma. She's meeting new people and still going to the day care. The best part is, I can walk there, and I do. They have great activities and I try to go for one each week. She enjoys having us hang out with her and it's nice to have something to do while we're there. If I'd known about this place last year, I'd have moved her there instead of with us. It's nice to enjoy visiting with her instead of "dealing". I feel like I have my Grandma back.
As for her PSP, it continues to get worse. It has slowed down a little, I think. While she was sick, she had a lot more symptoms. Since she's all healed up, most of those have gone. She has a nurse on duty all the time and they keep a close eye on her. Such a relief for me.

Those faint of heart... beware

Today I had to give Grandma an enema. This is something I'd never even imagined when I was considering taking care of and old lady. But she was having serious constipation issues. She was miserable and nothing else was helping. I called the Dr. having no idea what the recommendation would be. I was prepared to take her in, need be. I was not prepared for having to shove something up my Grandma's butt. In the end(pun intended) she feels much better. Although the drama-queen in me will tell people it was traumatic. Really, it wasn't that big of a deal. Certainly not pleasant for anyone involved. I hope to never have to do it again. However, if I had to, I don't think I'd die. I definitely won't put it off, that just makes the process more difficult.
In other news...I'm taking Gma for respite care this weekend. Many have recommended it and I have played the martyr. I realized that I was not only hurting myself but also Gma and my family. So, I signed her up and we're all looking forward to it. She will only be there for four days. I am relishing the idea of 4 good night of sleep. 4 days only having to shower myself and wipe my own behind. Seven months ago it wouldn't have even occured to me to appreciate these things. Oh, how times have changed. I have still only had one full nights sleep since Gma broke her collar bone in September. That's a long time to go without sleep, as any new mom will tell you.
Overall, Gma is doing well. The PSP is continuing to progress as expected, but it's slow. Most days are good. I find that the biggest determiner of a day is my own mood. She seems to sense my annoyance, tiredness, crabbiness and it affects how she functions. Ironically, when I'm already having a lousy day, or I'm really cranky, those are the days she does the worst. Not helpful. I'm trying to work on maintaining my mood for both our sakes.
Day care is working out great. They do a ton of activities and projects. She really looks forward to going. We have also joined the local YMCA. They have a small track that I can walk with her, using her walker. She enjoys the recumbant bike, too. The challenge is to not let her push herself too hard. In a few weeks, she'll be starting to attend the senior center to play BINGO. She's very excited about that. Either myself or the home healthcare aide will go with her, but I think she'll enjoy it.
We have had some really bad days. Days where she's rude or downright hurtful. Days I'm exhausted and would like nothing better than to ship her off. Still, I know that she wouldn't get the level of care I provide. I don't say that as a slam on nursing homes. There's no way that a busy nurse can compete with one on one care. Some would say I'm just too stubborn, but I really don't want to give up on this arrangement until I really can't care for her any longer.
Of course, the arguement it "Who is paying the price for my stubbornness?" The answer is, "Everyone". Our family life has changedm not all for the better. I have health problems I didn't have before. My husband has suffered from my exhaustion and frustration. He's the one that deals with my rants or crying fits. But at what point do you say it's not worth it anymore. I can't do this any longer. I don't know. The social worker says that I'm a natural "giver" and I'll never know. She says that I have to leave that decision to DH. So, it's now his job to tell me when it's too much. I don't relish that job, but I'm glad that someone has it.

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