Hi, I am new to the forum and I hope its ok to post this but I find it hard to talk to friends and family about the reality of my life. My husband has end stage parkinsons,parkinsons dementia and now vascular dementia. I looked after him for 15 years but after a long hospital stay following a fall it was decided I couldn't safely provide care and because oh his aggression wasn't safe with him. He's in a very nice dementia nursing home and I visit him most days. The trouble is I find I have no ability to remember that he ever loved me. When I visit he often is angry aometimes calm but all the things he talks about are pretty random. I am 70 and the people my age visiting in the Nursing home are visiting parents the people visiting husbands/wives are much older so I sort of feel disconnected altogether. How do I manage this would welcome any tips.
Forgotten love
- Thread starter maisiecat
- Start date
Oh my dear, I understand. This was my situation and that of others I know
You are not alone. You sound numb as I was. I too would have loved to know I had been loved. I used to have to take comfort from cards, old letters, things like that.
I am sure you were greatly loved.
Welcome to our forum and you will find such loving support here.
Geraldine aka kindredxxx
You are not alone. You sound numb as I was. I too would have loved to know I had been loved. I used to have to take comfort from cards, old letters, things like that.
I am sure you were greatly loved.
Welcome to our forum and you will find such loving support here.
Geraldine aka kindredxxx
Thank you, Geraldine,for your kind words. I know so many have trod the road I am walking but it is so difficult to keep a sense of self and what we have been to each other. Guess its one step at a time.
I suspect because you had been taking care of him for such a long time that you are mentally and emotionally spent. You need time to recuperate. Eventually you will remember the past as it was. Give yourself a chance and don't be so hard on yourself.
Hi Joanne,
Yes my husband had had Parkinsons for 15 years which is a hard,complex journey. He developed Parkinsons dementia 5 years ago and then vascular dementia a year ago. He asks to come home and I feel I am letting him down even though all decisions were taken from me because of the complexities for his care.
Thank you for your kindness I expect I need to be patient with myself
I think you hit the nail on the head when you talk about keeping a sense of self. You have been caring for so long that you have lost that person you once were and have forgotten what life is like when you are not a carer.
I think you have done a remarkable job going on for so long and I am not at all surprised that you have lost that emotional connection with your husband. Caring for a person with dementia just seems to grind away at the depths of your soul until it seems there is nothing left.
I guess you are feeling a bit like a fish out of water at the nursing home which is not helpful either. But you have taken the first step on the road back simply by coming on to Talking Point and expressing how you are feeling. I am sure that was very hard for you and the next steps just now might be a little easier for you.
We all have to find our own path through this experience and much depends on your own will to get yourself back. The worst bit is that dementia has controlled your life even though you weren’t the person with the disease and now it’s up to you to take back that control, little steps at first until you have convinced yourself that you can do it.
I know that losing myself was the worst part of my caring role and I tore myself apart with rebelling against what had become my life. It took a while and I tried a few different things but I got there eventually.
With your regard to feeling uncomfortable at the home because you are younger, my dad always used to say that we should never care about what others think because there’s every chance they are not giving you a second thought.
You are a brave lady if you have survived this long as a carer.
Thank you for your kindness in replying. I think that I had been drowning for years. Parkinsons is such a tough,unpredictable disease to manage and then 2 types of dementia on top has seemed relentless.
I spent the afternoon with my husband,he was bright today but he has no sense of any kind of realism. He talked of playing golf when he can barely walk and I guess he to is desperately trying to hold on to what mattered to him.
I left it too late to try and get carers etc and then we were in crisis. The worst thing is I sort of wish he would die to spare both of us any more pain and I feel so ashamed I even think that.
Are you still a carer? How did you cope with the guilt of rebuilding a life.
@maisiecat, many of us wish that our loved ones would die once their dementia has become advanced. I certainly felt that in the case of my mother and I don't mind admitting it. It would have been better if she had died at least two years before she did.
Hi Violet Jane, I am sorry to hear about your loss. Thank you for this answer but how do you cope with the guilt? Do most people need counselling? I can't talk to my children about it as I think they are desperate to get their mother back.
Ps how do I do the @with someone's name
Ps how do I do the @with someone's name
Don’t be ashamed about your thoughts about your husband. They are pretty common ones, especially after years of caring and knowing that there’s no hope of recovery. And combine that with having no idea of how long the person will continue to hang on, it’s not an unreasonable thought either.
Personally, I have been caring for my husband for ten years, following three years of the destruction of our marriage and an initial diagnosis of Alzheimer’s and a cardiac arrest. I became a carer out of duty and after a while, I became very depressed, angry and resentful and blamed my husband for how I felt. One day, when he had been particularly horrible, I walked out and went for a drive and a long walk on the beach. The day was a bit drizzly and windy but I was happier there than at home. When I got home, my husband seemed a bit shocked that I had left him standing there in mid sentence.
From then on, I walked out every time he started getting nasty and things improved, though we did have a time when he wouldn’t talk to me for three weeks. One of the days when I walked out, I was passing a little shoe shop that sold very bright and stylish shoes. It was an expensive shop so I had only ever window shopped there but today they were having their first sale so I went in.
I had quite a moment of self determination in that little shoe shop. I realised that the only permission I needed to buy a pair of shoes was mine and mine alone so I came out with three pairs of shoes. And felt so good, not because I had bought the shoes but because I had started to wake up to who I am and that I could be really me again if I persisted.
I have always been able to leave my husband for times during the day so I did that. I went for walks on the beach, had a late breakfast at my favourite deli, met a friend for lunch and spent some money on things I liked. There’s another of my old threads somewhere with pictures of some of the wacky and wonderful shoes I bought. They seemed to be symbolic that I was finally walking in my very own shoes on my very own path.
Since then, I have bought some clothes bright enough to wear with the shoes and have ditched most of my black clothes. The older I get, the brighter I get. And I turn 80 next birthday.
I have been a volunteer with an environmental group, mostly active oldies and I never a miss our weekly get togethers. I also go to a gym every week, run by an exercise physiologist and I take the pup to a dog park a couple of times a week, where he goes nuts and I am outdoors and chatting with like minded people.
So that’s my story and now it’s time to start your way back too.
you press@ and without a space, type in their name. the name will come up at the bottom of the screen so just click on it. @maisiecat
@Lawson58 . You are an inspiration!
After a particularly nasty couple of days, OH being so abusive I read about you starting to claim your life back and I thought YES I must do that before my life becomes none existent and I become a carer 24/7 365 days to a man who always had a short fuse and now it’s even shorter!
I love the idea of you buying shoes, brightly coloured shoes are my weakness!
My older posts complete with pics is Lockdown and the crazy things you do. My confession!
@Lawson58 I am loving those, just having them must make you feel brighter and I have been to the cinema with friends so trying to take some control
Good for you! with your husband in care, you now have the time to think about how you can change your life.
I don’t know if you have been visiting your husband every day but if so, why not have a day when you don’t go and make it a maisie cat day. Get your nails done or a new haircut, and if you have some spare cash, buy something special for your self. Maybe a new perfume.
Just remember that you matter and need some self love.
Similar threads
