hello. I’m peter and my wife Bridget has been in a care home now since August 2019
She has dementia, doesn’t recognise me as her husband and i’m finding it extremely difficult to come to terms with all i’ve lost. She’s mobile, walks about, generally fit but because of the dementia sees me but soon is distracted. I take flowers, look at her through the window. Covid restrictions allows me nothing so i look and see a woman who was once my darling wife ( she’s 74) who seems content. it’s me left with the memories and how this cruel condition has wrecked our marriage
I’m lonely for her, even though towards the end all she wanted to do was escape the house and i was forced to make care home arrangements. Such an intelligent, bright, forceful woman reduced to a almost childlike personality. The care home is great and i’ve no complaints. At first i wanted her back just to have her company but i know it takes more than me to keep her safe and healthy
I don’t mind admitting that i often cry at the slightest reminder of her or if i see her and i just sit in the homes car park after a visit. I love her so much. It hurts all the time and i lurch from Why us? to Why me? If only this and that and i should have done more. I don’t care for her directly anymore and i miss that caring role ( although it’s nice not being woken up at 2 in the morning). i need to care for her but i can’t so i do all i can by regularly visiting, taking flowers, chocolates, fruit and showing appreciation to the wonderful staff.
So very hard that your wife no longer recognises you. It sounds like you have done your best - found her a good care home where she has team of people to look after her; visiting her (even though due to Covid, the conditions are far from ideal); overseeing her care and taking her gifts. You might not be doing the day to day stuff but you are still her husband and carer.
Demential is very cruel. I don’t have experience of caring for someone with dementia but I have followed the stories of others on here.
Hello Peter
I have an understanding of your situation. My husband had vascular dementia along with other health issues. I always felt it was a long goodbye. He was in a nursing home. I was in a better position as I was able to visit regularly.
I wrote about my experiences on my new to dementia journey thread. Probably would be too much for you to read as I joined in March 2016.
I would advise that you take care of yourself. Believe me I know how difficult it may seem. However it’s essential.
You have and are doing your very best, in very difficult circumstances.
My heart goes out to you
Thanks everyone for replying so quickly. Just this minute had a phone call from the home to say has fallen and they found her on the floor. She’s ok but this is the second fall in two months. It reminds me everyday of the delicate nature of her existence and I’m in constant fear of the next fall being down the stairs or her breaking something.
And I’m not there to help, comfort, reassure just here with all the imaginings of what might happen. I feel sometimes my heart might break with it all. Every time the home phones me my heart sinks.
Peter
I remember so well the sinking heart when the telephone rang. I can’t tell you that it’s something you get used to, but somehow you learn to adjust. Have you other family members?
I’m near my daughter but Bridget is her step mum so not the emotional connection in blood. ( not that that always follows!). I’ve a good relationship with my daughter and Bridget’s children but apart from being concerned there’s not much else they can do. And now Covid stops travel to allow emotional mixing and support. Basically I’m on my own with this and I don’t feel I’m that strong a person, just a bloke lurching from one situation to another
I also post on the Alzheimers forum and have counselling once a week. I now have you so please be patient.
Being on your own allows you to form a support bubble with one other household. Could your daughter be your household support?
I hope I am not coming across as impatient? That is certainly not my intention. I understand only too well the feeling of devastation, watching the person you love deteriorate with this cruel disease.
The forum was, and still is a godsend to me. Gave me strength. Keep posting and vent if you need too. No one judges.
My daughter is my bubble and lives about 30 mins away. But sometimes I want to be alone with this as it’s easier to be miserable and cry in private. I’m going to visit after lunch just so I can see her to reassure myself that she’s ok.
Here’s the thing. Is it so bad and selfish and hard hearted and terrible to want all of this to stop? I’d be in agony if she died but at least… sorry can’t write more
Definitely NOT selfish!
My husband was not the man I married, and would have been mortified if he had realised the person he became. Occasionally his dry sense of humour shone through, which was was very comforting. I miss him very much, the man he was before the dreaded dementia set in. We had been married for over 50years. A young marriage and we were happy weathering any storms.
Please don’t think you are selfish. You are not. You still care and love her.
My mum was housebound for many years, had a series of operation, a bad fall, nearly had her leg amputated, there were over 20 illnesses listed by the GP.
Fortunately, I had health and welfare POA.
When the GP rang to say mum’s pain wasn’t being relieved by the level of medication, I told her that as I had POA, my instruction was very clear and simple. Pain relief MUST be her top priority, regardless of the consequences.
Mum passed away peacefully, in her sleep, 2 days later. Her suffering was over.
I miss mum every day, so often want to give her a ring to tell her something. But I wanted my bright, interesting, gardening mum back. Not the frail person she had become, unable to do anything at all for herself, stuck in a body unable to do the things she loved so much.
My son already has POA sorted out for me. I’ve told him he must do the same when my time comes.
My husband died of a heart attack in his sleep, at the age of 58, from a massive heart attack.
I miss him every hour of my life, but know that had he survived, he wouldn’t have been able to do the things he loved doing so much. After the shock, I am grateful he didn’t suffer.
My poor Bridget is a mere shell of what she was and I dread everyday seeing her deterioration. Will 2021 be her last year as that seems to be the elephant in the room with the family. Now I’m advised to consider one to one supervision at the home which will wipe out her money. The council are dragging their feet on funding.
I know it’s stupid but I want my wife back as she was and it increases the heartbreak wishing for a dream. I’m so upset all the time and when I need to be a strong man over all this change into a blabbing mess. And that’s no good and I know it’s no good but what can I do. I wish there was some strategy to use to get me through.
She should be entitled to NHS Continuing Healthcare if she has such high care needs!
Has anyone mentioned this???
Google “Grogan Case Continuing Healthcare” for some information.
Nothing wrong with crying. Who wouldn’t in the situation? As long as you can keep strong when the staff are telling you information. In my experience they see it as a way of you agreeing to suggestions you were very unsure of.
What reason do they give for one to one supervision? They can’t just say it without.
If her needs are now so complex then as Bowling says, an assessment is needed for continuing health care funding. Please mention it to them, to let them know you are aware.
I’ve heard from the care home and they’re investigating putting in a gate at the bottom of the stairs to keep Bridget on the ground floor. It would mean she can’t visit her room upstairs without supervision but on balance it would avoid an stairs accident.
I don’t see how that would be classed as one to one? Staff would see her going to the gate, and should distract her. There were lots of walkers, Pacers at hubby’s nursing home. Distraction was the answer. Actually residents couldn’t use the stairs as there was a lift. Stairs had a code for staff and visitors to use. May distress your wife to be constantly followed?
These are only my thoughts and observations when visiting hubby for 4 years. He had suffered strokes and lost the ability to walk sadly. I say sadly, if he could he would have tried to escape until the dementia was worse!
I still advise looking into CHC.
Regrettably no home is perfect. Some much better than others. The staff sound approachable where your wife resides.
Try to rest tonight, and I know that is very difficult.
The one to one idea has been shelved and I’m waiting their advice on a gate installation. I can’t influence much and I’ve tried to accept that there’s a lot out of my control. But as a man who loves his wife so much ( even if she doesn’t know me) I can’t switch off wanting to care for her. It’s an intolerable situation that is constantly changing and uncontrollable change means anxiety.
Hi Peter, what you are going through is living grief. You are grieving for the loss of your wife while she is still alive. So you are going through the same emotions as when someone loses someone close after death. I understand your feelings so very much. It is a living hell for you. You are amongst thousands going through the same thing and no matter what your thoughts are they are not wrong. You want her to live but how she was, not how she is now. So you are wanting it to end one way or another. I worked as a carer for years in a nursing home for people with different types of dementia . When the spouse/ children brought their spouse/parent into the home. The person with the dementia was well kept, tidy more often than not hair done and smart. The Spouse/child however was worn down absolutely shattered hair a mess and generally untidy. A Month on the Spouse/child was bright, fresh, hair done and smart and the Spouse/parent now appeared unkempt.
The reason behind this is not neglect of the person in care but to prioritise the quality of the persons life. This is often shown by not forcing the person to do things against their will as the most important thing in dementia persons life is to feel safe. So having persuaded someone to take a bath , that in a lot of cases has been enough for them to go through. Yes, they must be kept clean have good food and a warm bed. However what is important to them now is no longer what it used to be. Kind words from the staff, assisted eating and a calm surrounding is what is important to them. Relatives find this hard to understand to begin with and some ladies might still enjoy having their nails and hair done. My advice is to keep her well stocked with underwear. Understand that she is where both she and you need her to be. Go out somewhere after a visit and re-claim your life back, your new life. It does not mean you no longer love her, it is just that things have moved on. Remember she would have done the same with you in the same circumstances. You are tired love, very very tired. Now it is your time. Take care
Peter
Look up Ambiguous Grief if you can. It’s describes and explains what you are going through as Pamela states. I I found it helpful when was at a very low point.
I suppose any of you at some time have had disturbing dreams due to your dementia/. caring circumstances. Then again, some people don’t dream. This morning i woke up sobbing saying that dream was nasty, just awful
. In this dream Bridget was with us all, with our family and talking to them and i thought what a wonderful job the homes done to improve her conversation, she seems so normal, my Bridget. But then , when i go up to her and want to hold her and love her she says, “ go away, i don’t want you coming to the home any more, i don’t like you” . God, it was so upsetting.
Even trying to escape in sleep has its pitfalls with with every possibility of dreams like this that are so real and every chance to remind me what i don’t have, what I do want, what can never be again. And it reinforces my loneliness. I understand from somewhere that this is ambiguous grief, unresolved. But how can this grief be resolved in any way? It can’t and i just need to keep going on, day by day, getting to about now ( 20.30) knowing another day’s gone. And then to bed and dreaming! And so it goes on.
