She sometimes realizes that she has a situation that she can't understand. She wants an answer from me to explain it to her, but nothing I say helps and she just wants me to hold her and she clings very tightly. That is when inside I breakdown but hold it in, to not make her think it is hard for me to see and hear such a wonderful loving woman go thru this.
We use to dance Two or more times a week, and still she will ask me to dance with her, I ablige, but she cannot remember the steps, etc. but yet it is something we shared and about the only thing she remembers. I hold on to that because it is her for that moment.
I truly believe that she is caught up with real life inside and can't express it by any means and she is hurting from it. She can't speak or carry a
conversation but she try's and just stops with a sad look and I try to help her by parts of the words she forms until I hit on enough that she smiles and says yes. But sometimes it takes a while and if seems to tire, I tell her lets rest for a moment.
But for her and me this is a mostly silent world of looking and holding at and to each other.
I know this has been long, but I had a beautiful woman that always wanted to look her best and now can't but lipstick on straight. I will always love her.
It's okay to tell her a little lie when she's getting really down. Like the doctor is going to give her a new medication that shows lots of promise and will help her. Give her a sugar pill and let her enjoy a placebo effect and feel hopeful for a little while.
Do you have any help at home with your wife or is it just you? Hiring a caregiver/companion will do your wife and you a world of good. I did homecare for 25 years and has many ladies like your wife. Even women with dementia still have vanity. I kept my old girls looking good. Manicures, hair, make-up, nice dressing as much as their conditions allowed. It really helps.
I had many old lady clients with dementia who had become homebound for the fact that their husbands were afraid to take them out on their own and this causes even more sadness and depression. So, we'd all go out together. The formerly homebound care client would get the socialization and their husbands would be glad for it and the sadness would be a little less.
Please consider a caregiver/companion. I think you'll have a good experience with the right one. Hire privately from a caregiver website like care.com and be very specific about what youexpect from a hire. Then start interviewing.
Excellent advice as usual.
I do have respite grants that let me get out of the house and visit or do shopping as needed to get my mind on thinking of other things for short periods. But they are short periods because her thoughts are always with me. So, I do a lot of shopping for her for items I would think she needed, clothes , colonges, conditioners, polish ( which I do for her..nails and toes, can you imagine I never have done those things but you learn and she looks forward to it), etc.
Feel really out of place in those departments, but in my mind she is there, so it's o.k.
I also take her to special place that allows her in be with others with her condition and she gets to visit with other women,,its called "The Caring Place".
She is there for 6 hours at a time for two days a week, and it is special.
But, as for as help, she has a daughter close that very seldom comes around and if she does its for just a few minutes and always in a hurry to leave. Some times my wife does not even recognize, by the look on her face and I will mention her name. Then a smile will come across her face, but I do not believe that she really knows it is her daughter cause as she leaves, my wife does not comment about the visit. I told her daughter and son, they both need to spend time with her, cause the time will come that she will not know them..This may be the reason they do not come around to help. One thing, I think is their own guilt for not taking time...out of sight out of mind..But, they would be a lot of help it they did take the time and understand their moms condition.
My wife wants me to be with her all the time and is my shadow, cause eveywhere I go in the house she is right behind, I fear a fall for her,cause sometimes I do not know she is even behind me. I have learn to walk backwards most of the time so I can hold onto her hands cause she will fall if left alone at times to walk by herself...she has Parkinson as well.
She does not recongnize her home, thinks it is a Motel or hotel or someone elses home. Wants me to always leave a tip for the lady of the house for cooking and clean while we were here. I show her pictures of her family and she will respond, Daddy who are they and their names, how do we know them.
Well this is enough of the rediric and of your time. Thanks again for your time and consideration.
Take it from me I've been in this line of work for a very long time. Do not let your wife form a 'shadowing' habit with you or anyone else.
It's good that the two of you get time away from each other. She should also have a caregiver/companion to take care of the things women do. Like the nails and the shopping for cosmetics, etc... She'll feel better if you're not doing everything for her. Maybe not at first, but she will because no one wants to feel like a burden.
Don't think too badly of her daughter and son. It's very common for people to avoid loved ones when they have dementia. They don't know what to do or say, so they do nothing.
You are not responsible for these tears. You didn't cause this. You can fix this. IF you and your wife have been together a long time this isn't the first time you have witnessed her pain. The only difference now is that you are having the caregiver syndrome which means that you feel responsible to fix this the best you can. You can't.
My brother and I used to sit and talk about the way we saw the world differently when he had his Lewy's dementia. I saw a ALF van parked, one with huge white fenders. He saw a Diego Rivera Flower Market with men bent over calla lilies in white pants and black sombrero. Oddly enough when I looked into the distance I saw exactly what portion of wheel and fender he saw this picture in. He said he was terrified to know what was coming for him with the disease he learned he had, but he said he was glad to know he could prepare, get himself safe, share with me what he saw, and his fears, and he was glad to know why he saw the world differently.
The late great Oliver Sacks said "They have a whole world! It just isn't our world anymore". And it isn't.
This is grief, loss, and for your wife there are times it is a terror. There is nothing so awful as the loss of all we knew. You can imagine this. But you can't fix it. I am so sorry. I hope you will continue to try to dance together. My heart goes out to you.
I wish I had a brother like yours was...I miss him for you.
I think the simplest thing to say to your wife is that you love her and that you will be with her till the end, no matter what.
Because it frightens her what she's going through, it's important that she just feels loved and safe.
Don't make it harder than it needs to be.
And if you can't help her get her lipstick on straight yourself, perhaps like already mentioned hiring some in-home help might be not only good for your wife but for you as well.
I do hope and pray that you're taking care of yourself, as you matter too in this situation.
I'm sorry that you're love story will be ending differently than you both imagined, but know that despite your wife's broken brain, she still knows that you lover her
and I hope you know that she still loves you too.
You are a wonderful man . And I have tears . ((( Hugs to you and your wife)))
I hear the love that you have for your precious wife in your words. It hurts terribly to see people that we care about so deeply suffering.
You’re doing all that you possibly can for her.
I understand your fear of her falling. My mother had Parkinson’s disease like your wife does. They struggle with strength and balance issues.
One thing that helped steady my mother was doing home health care. Your wife’s doctor can order it.
Mom also did rehab in a facility after a fall. That helped tremendously. The exercises are tailored towards someone living with Parkinson’s disease.
My mother would say that her brain sent the signal to move but her body couldn’t follow through. This is why we see Parkinson’s patients freeze up.
Your wife is blessed to have such a loving husband.
My younger brother has been diagnosed with Alzheimer’s disease and will ask me, “How did this happen to me?” It’s heartbreaking to hear these questions.
My brother is afraid, concerned about his future, just like your wife is. Some questions aren’t easy to answer. If you think of a good answer, please share it with the rest of us.
Wishing you peace as you continue on your caregiving journey.
There aren't many men like you on Earth.