Living Bereavement for 5 Years

BettyBoo

Registered User
May 4, 2008
4
0
Berkshire
I am an only child and have been coping with a living bereavement for five years now caused through a stroke and a diagnosis of Vascular Dementia to my Mum of 84. Some days are good, others not. Steadily over the years, I have watched my Mum go down hill. Each time she has a fall, a mini stroke I have been told, another part of the brain shuts down. She is also partially blind which is not helping the situation. She has no quality of life and she cannot cry anymore.
She lives in Sheltered Housing with a Care Team to adminster her medication, prepare her meals, and shower her, but as they can no longer cope with her increasing needs, I decided I would put her into Respite Care with a Nursing Home as her weight was bothering me, she weighs under 6st. I do feel upset about this as I thought I would never have to get to the stage of putting my Mum anywhere like that.
The Nursing Home have now said that she is not safe to return home and I have tried to discuss this with her, but she seems quite upset by the situation which in turn, upsets me and then the guilt-trip sets in, but in the end I only want her to be safe.
I am feeling rather stressed out by this situation and am finding that I cannot concentrate at work, am irritable with my family and emotionally drained.
 

Christinec

Registered User
Aug 8, 2007
214
0
Hi,
Welcome and your feelings are so familiar. I do not know much bout Vascular Dementia but with my Mum it took me many years to realise that she cannot really make any constructive decisions and even if she appears to (the odd minutes of clarity) she will have forgotten them within a minute or two. The whole process of tryng to "talk to her" made her very anxious and eventually I accepted that I had to try to make the best decisions on her behalf. In my case complicated by other family members.

Like you it has affected my whole life but now Mum is in a CH I am confident(most of the time - a whole other minefield) that she is safe and I have some of my life back. Yes I still feel quilty and yes I think my Mum's quality of life is not great but that is the illness and I cannot really change that at all.

Like you I suspect in the many years leading up to this I have stretched my relationship with my husband to the limits and my children were sadly neglected as I worried about my Mum. How oftendid her needs take priority over the other people who look to me for support. There is also the effect on my work.

It is the illness - we have to try to get on with our lives and although I admire the people who take on full time care of parents I could not ever do this.

It makes me so angry to think that the lack of support for people with this illness means that relatives feel so bad about their actions. We had to wait for the crisis before anything was done and it just should not be like this.

Anyway try to accept that you have done what you can. in my experience staff at the care and nursing homes are generally the experts and they are generally not looking for people to fill rooms. If they say your Mum needs full time care they are probably right. Talk to other profesionals involved and sadly accept that perhaps your Mum can no longer decide she is to ill to go home.

By the way last time I saw Mum at her CH she looked better and seemed at least as happy as she has been for years.

Take care.
 

Cliff

Registered User
Jun 29, 2007
777
0
North Wales
Hello and welcome,

Know how you feel.

Dee has deteriorated with bumps over a number of years and our relationship has changed from a loving friendly wife and husband to a caring but still loving partnership.

It isn't easy and if you are young it must be much worse to see your Mum deteriorate like this.

Keep posting here, lots of people here will understand,

With kind thoughts,
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
Christine has posted very wise words.

Sadly your situation is one in which many people find themselves. We would all give anything not to have to make such decisions but dementia marches on relentlessly. Daily life just becomes an impossibility without 24/7 full time care.

Hopefully once your mother is settled in, she will benefit both in improved health and weight gain and there will be obvious benefits for her. I'm not sure whether she will ever understand why this has had to happen and that it is in her own best interests to be there. It must be very, very hard to live in a confused, bewildering world where you are so dependant on others.

I hope in time that you will find peace of mind and that you can have some 'quality time' with your mum when you visit her.

xxTinaT
 

ChrisH

Registered User
Apr 16, 2008
281
0
Devon, England
Hi BettyBoo
Welcome to TP. I too am an only child and long-distance carer. In some ways our situation is a little easier than others on this forum as we don't have the same level of possible family conflict over making decisions in our loved ones best interests. On the other hand, I would sometimes welcome a brotherly or sisterly shoulder to cry on and share the burden with (providing we didn't fight like my 2 boys used to!!). Instead it's just hubby and children and so far they are very supportive. I'm not at the same point as you as mum is still able, with a little help, to manage in her own home. However, this site has helped me come to terms with the progress that this illness will inevitably take and there are so many good suggestions, words of wisdom and sympathy here that I am able to look ahead and plan my next move.

I know that like Christinec I wouldn't be able to do the 24/7 carer route. It wouldn't be practical (own business, family, small village etc)and I wouldn't have the patience in the long term regardless how much I love my mum. When she gets to the stage where she can't cope at home I will look for somewhere in her local area so that her friends can still visit her and we'll go up as often as we can. When she gets to the stage where she doesn't recognise her friends (or they stop visiting her)I'll move her down here. Then I'll be able to visit her every day and she'll see more of her grandchildren. And I shall feel guilty as hell and angry that I haven't been able to do that while she was well enough to know us all. But short of winning the lottery (which I hardly ever do) that's how it's going to be and I'll just have to learn to live with it.

You're only doing what's best for your mum Betty and don't feel guilty about it. If she went home I think you would be even more stressed about what was happening between visits from SS etc. I hope she settles soon.

Chris
 

LIZ50

Registered User
Mar 23, 2008
56
0
Hampshire
Hi Betty Boo

Like you, I am an only child with my mum living with myself and my partner as she has vascular dementia and can no longer live on her own, although she still thinks she can. To be able to cope with this stressful situation I have had to give up work and my life seems to revolve around Mum.
How I agree with Chris about having a brother or sister to share the burden and even though I have a wonderful supportive partner it stands to reason that he doesn't feel the agonies that I do, but there again, there are no family conflicts either (only little me to make all the decisions) It's a no win situation.
I also feel that whatever decision we make, there is always a guilt trip involved. What I mean by that is sometimes I think Mum might be better in a home where she is always surrounded by other people as most days she only sees my partner and I and conversation with Mum is limited as she is in her own little world and our time together is not always quality time. Other days she seems quite content pottering around, sitting in the conservatory,listening to her music and I feel happy that my decision for her to live with us is the right one,at this moment in time.
Every situation is different and you will do what you feel is right for your mum in her situation and every decision you make is made because you love her dearly and want her to be safe.
Love Liz xx
 

BettyBoo

Registered User
May 4, 2008
4
0
Berkshire
Living Beareavement for 5 years

Hi,
Thank you all for the kind words, it is certainly helping the situation that I am going through.
I too have toyed with the idea of Mum living with my husband and I at home, but realise that I would have to give up work and maybe selfishly I don't want to do this, as I enjoy what I do and also the social aspect of it.
Also, I have no patience to be a full-time carer for my Mum even though I love her very much, each stage she goes through makes me irritable as I watch her deteriorate.
I was advised by the Nursing Home not to visit my Mum over the bank holiday weekend, so she would settle hopefully, but this has been agony for me as I am used to seeing her everyday, or certainly phoning her.
I am due to visit tomorrow afternoon along with the SS Manager - so watch this space .......
Betty