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New to dementia journey - Page 38 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
938 posts
Upset myself today. Hubby was so so out of it, I thought a couple of times I was losing him. Shallow breathing and half closed eye rolling back. Staff said he had been fine in the morning and eaten his breakfast. He had been showered etc. Spent 3 hours with him and had about 15mins response from him. Positive response.
Found myself thinking ' if you really want to go to your mom now, I love you enough to let you go' . Wicked thought. Why was I thinking like that? I'm losing him slowly to this dreadful disease, but it was like I was subconsciously​ pushing him along. Oh dear. Feel a little better for offloading my deep inner thoughts.
Please, please don't torment yourself. I went through similar with my husband in cancer end stage - you can't bear them to go, yet you long for them to be able to 'escape' the prison that their body (and in your poor husband's case, his mind) has become for them.

There is no 'right' answer....because they simply should not be that ill.

In a way, it doesn't matter which answer we give - stay, or go - because it is not within our power anyway. What will happen, will happen, outwith our desires for them.

Hoping the next visit is easier for you - kind regards as ever, J
Is it wicked? What would he think if the tables were turned? What did he say about others stricken with dementia?
My mum, physically disabled, told me that sometimes she would wake and think "Oh no, not another day like this. I knew then that it was an increasing struggle for he to be brave and soldier on. The last straw for her was when she lost her bladder control. It took ages for her to explain to me why, when she had always had a bath without fail every day, she suddenly didn't want a bath. She knew that she would contaminate the bath water with her urine.
She was living what I call a Half Life - heart still beating, lungs still working, but robbed of everything which gave life meaning and enjoyment. When she passed away after months of suffering, everyone was so relieved that her suffering was over.
Surely you were not wishing your husband was dead, but incredibly sad, just wishing he was fit and strong and well again, the man you once knew and loved, but knowing that can never be?
Jenny and BB. You are both quite right of course. I'm not wishing him dead as such, but grieving for what he once was,and what we are missing out on. Feeling in limbo.
Thank you for making me feel less wicked. Seeing deterioration in lots of the residents is hard too. Brings the situation home. Must try and pick my mood up. X
In the last ten years when two aunties have been in either Hospital or a Nursing Home, when it looked like
they were near the end of the road, I asked the staff to request the Hospital Chaplain in the one case,
or the local Vicar, to attend. I believe that helped my two relatives, and it also helped me and other of my relatives.
Do you think it could help both your husband and yourself?
It gave me a feeling of Peace and stopped me worrying.
Thank you Colin. I don't think hubby is in the later stages of vascular dementia, more middle stage. I don't feel ready to ask for a chaplain yet. He's actually quite content, according to staff, and thinks he has been to all sorts of places and work etc. Often tells me that's why he is tired!. Of late he is very very sleepy. Poor hubby, he is imobile. I've bought him a specialised chair that he seems comfortable in. Loves his television too.
I can make an appointment with the admiral nurse if I feel am struggling again.
"Wicked" is never a word I'd use to describe you! You are one of the most loving, thoughtful and caring people I know.
Of course it's not wicked to have these thoughts. Any pet owner knows them and can voice them, so I've never understood why its sometimes frowned upon to voice them about humans in suffering. None of us who truly care and love someone can bear to see them suffering. You are most certainly not alone thinking this way.
Exactly one year ago today hubby went into the nursing home. 16months since he lived with me. Not so new to the dementia journey now. Still scared of the next stages, still get the knot in my stomach when visiting, but treasure when it's been a good visit. I've accepted now, that for me, every day visiting is not the best, as I get so emotionally exhausted and am not my best for him. Obviously each to their own way of coping but... I can see the difference in the everyday visitors, and those who struggle everyday. That's not me judging,by the way. If I've learnt anything, it's not to be judgemental. I've made new acquaintances and a couple of new friends because of this sad situation. I've also discovered who my true friends are.
It's still helps me to carry on with this difficult time by posting on the forum. So thanks to all for listening.
That's a sad anniversary, at a sad time of your lives, the two of you.

I know this isn't much comfort (at all), but with all such anniversaries there is a sense of, not exactly 'relief', wrong word, but a term that denotes that you would not wish to have to repeat the previous year. I feel that with my sad anniversaries now. The future can't bring happier ones again, but there is a 'comfort' of sorts in knowing that I don't have to relive at quite the intensity of loss as I did the previous year. At the same time it's upsetting that each passing year separates me more and more from my former 'happy time', and you may feel similar yourself alas.

Perhaps all we can do is raise a glass to the fact that we did have happy times, and be glad for that. Not everyone gets that at all in their lives.

It's an ancient dilemma, isn't it, that question the poet asks (not sure which one!) (Tennyson?) - that 'it's better to have loved and lost than never to have loved at all'.

(Simon and Garfunkel said it too - 'If I'd never loved I never would have cried'.....)
938 posts