What a profound and pertinent question. I wish I could answer simply. If I had a chance all over again I would not willingly have put myself in for how it was (but I think I experienced the more extreme issues of dementia). No, I am fortunate to have come out of it with my sanity, if not my physical health more or less intact although the intense anxiety remains even though my husband has been in a nursing home for a year now. But I do not know what the alternative would have been. Yes, I do, but I'm unwilling to say it! Thank you for giving us the opportunity to think about this and all strength to you. You are right, the sacrifices are tremendous. Kindred. All good wishes to you.
looking ahead...
- Thread starter SaraKate
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Hi, Many years ago, after seeing a loved one spend some difficult years in a care home, we made a promise to each other that we would never allow one of us to go into a care home. That promise weighs on my mind now that my OH is suffering from frontotemporal dementia which changes the personality a lot. I have to deal with severe mood swings and temper and aggression along with all the other things that dementia brings. I am a willing care giver at present but I do worry that that situation could change in the future. There are no rules, we all do what we can, when we can. Best wishes.
I care for a parent, which is quite different from caring for a spouse or partner. My mother has been in a care home for four years and before that, I was her long distance carer.
If I could go back, I would do some things differently. If I had known then what I know now:
I would have learned more about dementia sooner, although realistically, I started learning as soon as humanly possible after her diagnosis (which coincided with a crisis, sectioning, and a move and then the need to clear and sell her house).
I would have contacted my local Alzheimer's Society chapter sooner and availed myself of their resources, particularly the support groups and workshops, sooner.
I would have not given up so much of my own life.
I would have taken better care of my own health.
I would have been more open and upfront with friends and family about the depth of my despair and depression. I honestly tried, or thought I did, but I don't think anyone heard me or took me seriously.
I would have taken up offers of help from people who did understand and did care, sooner and more often.
I would not have sweated the details nearly so much!
If I could go back, I would do some things differently. If I had known then what I know now:
I would have learned more about dementia sooner, although realistically, I started learning as soon as humanly possible after her diagnosis (which coincided with a crisis, sectioning, and a move and then the need to clear and sell her house).
I would have contacted my local Alzheimer's Society chapter sooner and availed myself of their resources, particularly the support groups and workshops, sooner.
I would have not given up so much of my own life.
I would have taken better care of my own health.
I would have been more open and upfront with friends and family about the depth of my despair and depression. I honestly tried, or thought I did, but I don't think anyone heard me or took me seriously.
I would have taken up offers of help from people who did understand and did care, sooner and more often.
I would not have sweated the details nearly so much!
This has made me think. At the moment I care for my husband, so I know what it's like. I shall tell my daughter that if at a later date I also suffer from dementia she must not hesitate in putting me in a care home.
I have told my daughter that too! I am trying to be independent of her doing chores but have said her company is another thing. She does take me to hospital, and is supportive but I need it to be her choice.
We need cheerful companionship as a fish needs water!
We need cheerful companionship as a fish needs water!
So right. But if we feel there are enough funds to cover Care Home costs, then we’re fortunate, and our daughters are fortunate. Others, as I am very aware, are not in that fortunate position.
I think many of us cannot self fund or not for long.
I feel as a nation all governments had failed us.
We insure for fire and theft to spread the load, spreading the load is what a good society does.
Imagine having to individually grow wheat to make bread, while home schooling, mining, fishing etc.
Life is a trade off.
It seems on here that most people have to end in a home, but that is not so.
In principle I need to give our girls permission to arrange for a care home. I would not want them struggling.
Funding is a different issue. A minefield.
We were promised that the system would ensure Care would be there, they even called the tax national insurance. A case for trading standards?
Private pensions were not as common as now and less so for women.
If the first one of a couple goes in, savings are used down to a fixed sum, then the council has to fund.
It cuts choice.
For the second there may be a property to sell, many are renting though. More over sixties are renting as the cannot renew mortgages.
We must put pressure on MPs to tackle this.
We have enough to do without worrying about funding issues.
I feel as a nation all governments had failed us.
We insure for fire and theft to spread the load, spreading the load is what a good society does.
Imagine having to individually grow wheat to make bread, while home schooling, mining, fishing etc.
Life is a trade off.
It seems on here that most people have to end in a home, but that is not so.
In principle I need to give our girls permission to arrange for a care home. I would not want them struggling.
Funding is a different issue. A minefield.
We were promised that the system would ensure Care would be there, they even called the tax national insurance. A case for trading standards?
Private pensions were not as common as now and less so for women.
If the first one of a couple goes in, savings are used down to a fixed sum, then the council has to fund.
It cuts choice.
For the second there may be a property to sell, many are renting though. More over sixties are renting as the cannot renew mortgages.
We must put pressure on MPs to tackle this.
We have enough to do without worrying about funding issues.
This has been a good thread to read! All hail to all the carers. There isn’t a day where I don’t think -I can do this better ! And often fail. But being a carer, for someone you love, is a worthwhile life - I want to have more patience, and more gentleness - but am happy to obtain any real offers of help! Such respite helps me be a better carer. Blessings Mud Joy
You are so right. I would love to remind the government of this, but it would be pointless.
My daughter said something sensible the other day, that it is not usual for married couples to be in each other’s company 24/7. All this seems self evident but sometimes we need to be reminded that we are leading abnormal lives and give ourselves some credit for coping. Usually we part for a greater part of our day and do different things which makes for more interesting discussions at the end of the day. Couples have both hobbies in common and separate interests. This disease changes all that and I read over and over again that the carer is in the company of his or her partner all the time with little or no sensible discussion. This is not normal so no wonder we get stressed but can do little about it other than get someone else to help for a period.
This is a complex question. At present Mom and I have just started to receive help after many years of trying to support her myself. It is only now I am being to understand the stress and hard work involved. Would I have chosen this, no absolutely not, but I am pretty sure my Mom wouldn’t have chosen Alzheimer’s either. Looking after a parent ,is hard work. But the alternative is to see someone you love in a position that makes them vulnerable, and I don’t think many of us can walk away from that.
Alzheimer’s is a terrible disease for everyone involved, there are very few silver linings, it is a thief. It’s taking my Moms mind and for me it as taken the chance to dream, it as stolen holidays,sleep,humour,friends,peace, and returned nothing.
Would I do for anyone else, no. Will I be grateful when Mom is able to go into care, yes. I feel then a can finally enjoy the few last moments of contact with Moms mind , without trying to workout how to keep her house clean,her clean and fed, the bills paid, and keep a roof over my head.
Alzheimer’s is a terrible disease for everyone involved, there are very few silver linings, it is a thief. It’s taking my Moms mind and for me it as taken the chance to dream, it as stolen holidays,sleep,humour,friends,peace, and returned nothing.
Would I do for anyone else, no. Will I be grateful when Mom is able to go into care, yes. I feel then a can finally enjoy the few last moments of contact with Moms mind , without trying to workout how to keep her house clean,her clean and fed, the bills paid, and keep a roof over my head.
Hi Mudgee Joy,
Only just picked this up, yes now have support from SS and cleaner, since Christmas. Made a huge difference,suddenly reliased I felt relatively happy the other day, for the first time for a longtime. Hope this means I can have better quality time with Mom.
Only just picked this up, yes now have support from SS and cleaner, since Christmas. Made a huge difference,suddenly reliased I felt relatively happy the other day, for the first time for a longtime. Hope this means I can have better quality time with Mom.
My husband was diagnosed with dementia the week before Christmas 2017 at the age of 58 and I think after the initial trauma it was a great relief. we have been together since we were teenagers but in the years leading up to the diagnosis I thought, as someone else here has said, that our marriage was falling apart. The realisation that it wasn't me (or him) that was the problem made such a difference. My husband has changed so much but I still see glimpses of the old him and have learnt that if I slow down, go with the flow and try not to stress then life is much better than it has been for a long time. What I do think is that I could never abandon him. After all these years (43 in July) we are in this together. I know he's far more frightened of what's happening to him than I can ever be and I try my hardest to make everything easier for him. I'm not a saint and I don't always get it right. In fact some days I get it very wrong but I know he would be there for me it the tables were turned so I always resolve to do better. Also, as someone else said, I have a life inside my head which I can go to in dark moments.
Oh what a beautiful, uplifting post. Thank you sweetheart, thank you. Warmest, Kindred.
Yes WA123 - I agree wholeheartedly -and I was the same RE “in the years leading up to the diagnosis I thought, as someone else here has said, that our marriage was falling apart. The realisation that it wasn't me (or him) that was the problem made such a difference’”
Some days or hours can be very trying though- the confusion in my husband seems to be getting worse - I have learned to agree with almost any statement but it can be sad and isolating . But still I am here to take care of him as best I can.
Some days or hours can be very trying though- the confusion in my husband seems to be getting worse - I have learned to agree with almost any statement but it can be sad and isolating . But still I am here to take care of him as best I can.
