With my grandmother, I’ve found that she doesn’t do well with strangers, or in a different place, other than her own home. She feels and acts better when she’s around only the people and places she’s very familiar with…even though their memory is going, they still somehow ‘know’, if they’re not too far gone, I believe.
My grandmother can’t go to the store anymore, without becoming very confused, she can’t look for the groceries she would like, because she can’t comprehend anything that is on the packages, let alone actually comprehending what it says on the packages.
She gets very confused when she goes to the doctor, and she becomes a basketcase when she has to spend any amount of time in a hospital, or other strange place.
So, she’s pretty much homebound now. I did get her a wheelchair, so I could take her out to visit her sister, who is in a nursing home, and to visit with her other sister, who lives in a seniors apartment complex.
Still, she’s not at all in her comfort zone in either of those places, so the trip for her is very full of stress and uncertainty.
It’s really just best that I keep her at home, and let her go outside into the yard, sit on her porch swing, or take her to visit a neighbor, if she wants.
I don’t know what else to do.
It’s rough on the caregiver, that’s for sure. It’s rough for the entire family to see their loved ones go through this.
All you can do is be patient and be alert, because they can’t be.
I’m chiming in as well because I’ve been going through this for 2 years now. ‘Luckily’ my mom fell and shattered her leg which put her in a nursing home where the rest of her symptoms came into focus. It’s been rough and I hate like hell she’s in a nursing home for good now but the dementia and Alzhiemer’s has made her cranky and difficult so 24/7 care is for the best.
Every phone call goes in circles at least once very 10 mins, she asks me questions I can’t answer (“How do I work this thing?”), and she begs me to get her out or come down to visit, neither of which I can do. I have worked through my grief and that bites too but it is what it is. My mom is gone and I still need to respond to this shell like it’s someone I know.
One thing I can highly recommend is watching the legal aspect of things. I got railroaded into a guardianship by my cousin who lives closest to my mom and it’s been a nightmare on top of a disaster. It was mostly my fault for not doing the homework and educating myself but my uncle is a professor of law and that side of the family assured me it was the right thing to do. They also lied to me on more than 2 counts so I have a slow motion train wreck on top of everything else.
I think there has been a lot of good advice here for you Winnie and I couldn’t be more sympathetic to your situation and for everyone else caught in this living/non-life crunch. It totally sucks.
Chiming in here too. I am the major caretaker for my elderly mother who has Parkinson’s Disease and dementia. I get a lot of support from my family and community through the local Office of Aging (state funded). If anyone is concerned about home care and funding, that may be a good place to start.
On a personal note, I think that one of the best things that we can do, as caretakers, is to take care of ourself too. Letting others look after our loved ones can be a difficult thing to do, at times, but is very necessary for our own well being.
I have to agree with most of the others here, Winnie. Christmas get togethers can be a bit overwhelming and crazy. Perhaps you could take her out for a nice holiday celebration on her own. That way you can spend some time with her, celebrate and reminisce, without all of the noise and agitation.
I’m so sorry to hear about your grandmother. This stuff is horrible. Please try to arrange some kind of full-time, managed care in a secured facility for your grandmother. Trying to take care of her yourself is commendable but you need training and you need time to live your own life as well.
In my own case, my step-mother has serious dementia but is only 64 and still physically robust. My SM would become violent, refuse to bathe, throw food, and other deliberately antisocial acts. We tried taking care of her at home ourselves but neither of us have the necessary training. A full-time care giver was also tried but that didn’t work either. In the end, we realized that my SM was destroying the lives of both my sister and myself. It wasn’t her fault at all but we could no longer take care of her at home.
This is one of the most horrible diseases/conditions I can think of. The really nasty thing is that, initially at least, they have occasional flashes of lucidity where they recognize what’s happening to them and realize that they are going to regress in a moment and there’s nothing they can do about it.
My Grandfather had Alzheimers. We ended up putting him in a nursing home when he attacked my Grandmother. We quickly realized the familiar surroundings were a HUGE buffer. One day in the home and it was painfully obvious exactly how far gone he was. His home hid that. You can fake a lot. An example: He would always sit on the loveseat and read a book. With Alzheimers, he sat on the couch and read the book, except the pages rarely turned and he never finished it, but he could sit there and pretend to read. At home he could be “forgetful.” In a different environment, he was blatantly incompetent. Ragingly incompetent. It was a huge eye opener. They may have dementia, but in the beginning they develop coping strategies for it.
I tried to enjoy the man my Grandfather became. No, he had no idea who we were. Yes, he was far more cranky than he was before, but he had the same sense of humor and would tell the same stories. Don’t try to force them to call you by name or remember them. (I found it was great, I would change my major every time I’d tell Grandpa I was going to college until I found a major he liked)
Be brave. They don’t KNOW they have lost their mind. When it begins, they know, then they forget they know. In the beginning, it is terrifying, then, in the end, they aren’t the ones suffering, you are. You know what they are missing and what is gone. They don’t.
My dad had Alzheimer’s for the last four or five years of his life. We all learned not to take the things he said too personally, although my mom took the brunt of it and had the hardest time dealing with the vile things he said towards the end (He did not like being in a nursing home). She got petty revenge by choosing his epitaph: “Per ardua, ad astra.” What the hell, it’s her headstone too.
Your grandmother has been visited by the brain thieves. Remember that as it gets even worse.
This is absolutely what I feel, too. My grandmother moved into a care facility a little over a year ago, after living at home with a caretaker visiting daily just didn’t work anymore; she’d make herself tea and forget to turn off the kettle, she’d go outside to take the trash and forget which door she lived at.
The first time I went to visit her, I cried all the way home. Growing up, I had always been my grandmother’s favorite grandchild, the one she was so proud of. Now, she remembered the dog, but not me. (Now, she still remembers the dog, but she has some trouble remembering what species she is: “Ooh, there’s the horse again!”)
She’s physically in great shape for someone her age since she’s been an avid gymnast all her life; unfortunately, this means that she should live for several more years and get progressively worse the whole time. Then again, my grandmother hasn’t been alive for over a year now. This is a completely different woman I’m visiting. It hurts, but for me, it helps to distance myself emotionally somewhat from the person there and remember privately the person who was.
Winnie - my sympathy to you and your family - having a relative with dementia is rough and sad to say, will probably get rougher.
My father died of early onset Alzheimer’s 13 years ago, and because he was physically healthy and young, the mood swings and changes in his personality caught us all by surprise. Like everyone else has said, your grandmother is now a different person, and instead of being happy to be with her family, will start to get overwhelmed by the noise and chaos and will probably regress for days afterwards. The constant complaints are just a symptom of the turmoil that she’s feeling.
It will probably be better for you to visit her in a small group for Christmas. Keep things light and cheerful, and say and do things which she may remember from years ago (like old family traditions). If you can bring her a few treats, that will probably go down well. Watch for any signs of stress while you are there, and be prepared to cut your visit short if she is getting upset.
Please also remember Sandy, her carer - she will need lots of support and respite during the time ahead.
I think, with regard to moving a relative into residential care, this is the hardest part. If the person is saying, completely lucidly “this is awful, you can’t do this to me,” it’s so hard to know whether it’s them speaking, or the madness. Because anyone would say the same: if someone tried to incarcerate me, I’d be saying, too.
This is what has happened to my mother-in-law a couple of years ago. She literally had to be put, kicking and screaming, into a van by men in white coats, and was very distressed once she was in the nursing home. If I had been there, I don’t know whether I’d have been able to bear it, even though I dislike her.
Yet a few days before she had nearly burned herself to death in her bed, got a DUI and lost her driver’s licence, and she had let her house become infested with rats and dirty dog food cans, and newspapers piled to the ceiling.
A few days later she was perfectly happy in the home, and a few days after that called her son’s cellphone 67 times in the space of a few days, alternating between distress, charm, and vileness. Then she thought she was going home the next day, every day, for months.
In Indiana, or at least the area I live, the patient must go into the nursing home, on their own. They cannot be forced to go. Otherwise, the nursing home refuses to take them on as a patient. This happened with my great aunt. The family had to ‘trick her’ into going into the nursing home. She had no idea that she would be living out the rest of her life there.
This also is the case with my great aunt. She is so far gone, but not far enough to realize that she’s not in her own home, and she says that she’s going to go home every time we visit her.
She’s been there for nearly 2 years.
She STILL thinks she’s coming home.
Og, I detest this disease.
I’ve seen it, and dealt with it, with my great aunt (my grandmother’s youngest sister, who is in her late 80’s), now my grandmother (who is 91, soon to be 92 in Feb.), and I’m seeing the first signs of it with my mother (who just turned 68 on Monday).
I guess I should talk to my husband about this, and get things in order for me, as it looks like I’ll probably have it, too.
Winnie, I am sorry to hear about your grandma. My grandpa also suffered from it on his last years. It was a horrible experience to all. Even at his 80’s, he was a physically imposing man, and controlling him wasn’t easy. He spent his last months basically tied to a chair in a nursing home.
We spent the last year or so mourning the loss of a man we had loved and still having to take care of this new being that didn’t know who we were and didn’t want us there. My grandma, who took care of him when his dementia was still the kinda-funny type, and fought all the way against having him institutionalized, took it the hardest. Luckily, now that it is her who is suffering from it, we can afford to have her taken care of at home, with constant nurse care around the clock. I don’t think we could put her in a nursing home after all she fought against having her husband put in one.
I wish I could give you some hope, but I just cannot. It will get worse and you have to be strong. “Simple” as that. As others have said, don’t feel bad about looking for professional help and don’t take things personally. At some point it will no longer be her you are dealing with.
Auntbeast really nailed it: the family and friends suffer far more than the patient who has ALZ.
Dad had no idea how he kept us up most of the night when he was at home.
He didn’t even feel the pain of a DVT in his leg and we finally noticed it when it got really swollen.
Towards the end, he was no longer interested in food or drink. He was getting thin but told us he was “getting too much to eat.”
In his nursing home room, he would point to a corner and tell me to lock the garage door, make sure the house was locked up, pay the bills and so on. I just said I would and that pleased him. Just go along with it. That’s all you can do.