Why do we do it?

Bee.quilt

Registered User
Dec 29, 2017
85
0
I do it to save my children. Who else is there ? Until 50 years ago OH was the love of my life, then I woke to the reality that he was a sexual bully , exploiting my love and blaming me for being unadventurous. Now, when I could leave him, I see him helpless and I’m drawn back by compassion to do my best for him. No way can I let my son and daughter blight their family lives by taking him on. Why do we do it? We all have a compelling reason. There are glimmers of laughter though. Having bullied OH into his first shower fo three weeks, filled a jug with steradent for his multiple dentures, two hours later I found him searching the stationary cupboard for the teeth he’d put there. [Not)) I went to my greenhouse to let out the laugh. You’ve got to take the humour when you can. I might be luckier than those of you caring for someone you love. It doesn’t make it easy though. Great admiration for all carers. Keep smiling.Bxx
 

lincs lad

Registered User
Oct 13, 2014
12
0
I've been thinking today, why do we do what we do? Why do we sacrifice our lives for someone else? I don't have an answer. I know that whilst I love my OH I resent the fact that dementia has robbed us both of our lives. Why don't I walk away? Love? Duty? Guilt? Am I i worried about what other people will think? I don't know. I stay but I hate the situation I'm in & I often wonder if it makes any difference me being there or would anyone do?
i know your pain going through it now ,lost it the other night lucky they didnt put me in special hospital with wife ,i now go day to day with this disease but i cannot live without her.
 

Banjomansmate

Registered User
Jan 13, 2019
5,395
0
Dorset
Although we have never lived together I have spent the last three to four years “caring” for The Banjoman due to a combination of love, gratitude and duty and because who else will do it? His family live too far away to be useful. He would only sign LPAs if I was his Attorney ( although I insisted on family being on them for obvious reasons) and he trusts me and relies on me.
We have known each other for 20 years and been close for around 14 years. There is no way I would just desert him when dementia started to gnaw away at his brain so here I am, supporting him in every way I can. I appreciate that I am lucky that I have not had the 24 hour, 7 days a week proximity that couples living together have endured but I have had phone calls in the middle of the night and driven ten miles across heathland and forest to see he was OK then taken him to hospital when he fell and broke his nose. Or phoned by Careline because he set off the alarm and didn’t respond to their calls so please could I go and check he is
OK? Equally there was the worry that he lived by himself and was going to the Dr.’s surgery at 3.00.a.m. because he had no idea of the time and phoned me to tell me there was nobody there! These and myriad other worries have meant that I have had the pressure of looking after him whilst his family are mostly ‘invisibles’ or create more work for me when they come to visit.
The hassle should lessen now that he has recently moved into residential care but that is further away than his flat was and whilst they have taken on his day to day care, I still have to keep an eye on things. Tomorrow morning I have to meet him at the hospital for a pacemaker check. Hospital transport will take him but he cannot be left alone there so I will spend my morning sitting waiting for him to arrive, possibly up to an hour before the appointment time, wait during his appointment and then wait until transport arrives to take him back to the care home, all for a 20 minute appointment! If I didn’t have my dogs to worry about it wouldn’t matter but everybody seems to think that if you are the carer then you have all the time in the world and can be there at any time.
 

patbryn

Registered User
Mar 22, 2019
80
0
Wales
Why do I do what I do? because I can not think of anything more worthwhile in this period of my life to do with my life
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
I didn’t choose to do it, it just happened slowly and then fast by which time I was just ploughing on trouble shooting as we went along trying to plan for the future I now have. I am still doing just that, and because I now realise that the psychological effects are starting to prey on me, I am now planning ahead to try and minimise them. Respite care and a recovery break for me are not the easiest things to plan. As I do all the paperwork I fully realise the profound loss my husband has experienced because he couldn’t do any of this any more. I am heartbroken by this loss as we clear the rest of his office which he has been able to keep but hasn’t been able to use and all the work he did over a lifetime has to be dealt with. Every little scrap of paper is like a hammer blow as I see what he has lost.
 
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70smand

Registered User
Dec 4, 2011
269
0
Essex
I am in awe of everyone on here and also feel so sad. I know in the early days my mum tried to shield me from the awful situation she was going through with my dad before he was diagnosed with Alzheimer’s and after. I watched as Alzheimer’s almost ripped them apart and sucked the life out of their wonderful marriage. Now, over 16 years later my dad is in a care home and my mum is by him every step of the way, having visited him every single day, bar one for the last 2 years for hours I see the sheer love she has for him and it breaks my heart.
 

AliceA

Registered User
May 27, 2016
2,911
0
This is perhaps the most important part of our very long journey together. I would like to see it honoured for what it is, however I physically struggle this part is full of meaning too. I have certainly learnt a lot, especially about letting go but loving more. I have also learned I am frailer and stronger than I thought possible.
What else could I do?
 

AliceA

Registered User
May 27, 2016
2,911
0
Why do I do what I do? because I can not think of anything more worthwhile in this period of my life to do with my life

It ís good having you post on here, although I am aiming for nonduality:) in my approach to life.
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
My marriage vows was for richer and poorer in sickness and in health....
And I would like to think if it was me he would return the favour
 

patbryn

Registered User
Mar 22, 2019
80
0
Wales
My marriage vows was for richer and poorer in sickness and in health....
And I would like to think if it was me he would return the favour

I think what you have said is very important, if you are certain the person you care for would do exactly the same for you, then it is in an impossible circumstances possible to find joy in what we do, is that the right word, joy? joy mixed with sadness is perhaps more correct.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My marriage vows was for richer and poorer in sickness and in health....
And I would like to think if it was me he would return the favour

If/when you get to the stage of a care home, please remember that the marriage vows dont stipulate that both parties should live in the same place
xx
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Canary that's so very true ,I often lay and watch him sleep and think of that .I am a weak person and this caring for someone is so hard .its people like you who are stronger than me that keep me going .I will remember your words when that day arises thank you
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
To be brutally honest, I do it because I would be poor if I didn't.

In the years before my husband's diagnosis, his behaviour was showing signs of what I now know was Alzheimer's and the personal struggles destroyed our relationship. In the middle of all this, he had a cardiac arrest and took months to recover. At one stage, prior to his cardiac arrest and his AD diagnosis, we seriously discussed separation but it didn't make financial sense so we stayed.

But I do have a strong sense of responsibility and acknowledge that it is my duty to care for him while I am able.

I also wish that things could be different for both of us. We were both very happy globetrotting and had spent years living and working in other countries. That all came crashing to a soul destroying end but while he is perfectly happy going off to his bridge club a few times a week, I feel trapped and am very aware that time for me to take off somewhere interesting is starting to run out. I resent that my travelling days are probably over because of his illness and this is aggravated by the fact that he has no appreciation for any of it.

I used to be one of those people who would decide that I wanted to go to Europe so would find a fare and be off in a week. How I loved that freedom!

It is not often that I read my story, but I think our lives must have been similar.
My husband lived and worked in 14 countries and was a great world traveler, trekker, mountaineer and sailor. An active guy. I, too, had lived and worked all over the world, all over the USA, Alaska and England and France. We then ended up in Switzerland not a bad place to be.

Like you, I have a strong sense of duty, and I do remember the love , but as his disease started so early and was not diagnosed immediately for what it was, we had very early years of lots of strife and the breakdown of our marriage. I had considered separation before the diagnosis. Once he was diagnosed at 49, it was easier to deal with as I knew it was Alzheimer's and not his fault and it gave me clarity. But financially because I still had all my children in studies at the time, the youngest was 11 it would have been difficult financially to dissolve the marriage. And of course, the professionals estimated he would live 10 years with Early ON Set.. as I was working for a big pharma company I got him onto a clinical trial where the drug was not brought to market but I do believe that it seriously slowed down his disease progression .....it has been almost 17 years! I thought I can do this for 10 years....but now it has gone on and on and I think he will most likely outlive me. I have had two bouts with leukemia now and although I can live and manage, the disease I am not as healthy as I was.

In the beginning, I would take off and leave and travel by just having the kids stay and asking relatives to stay. But that gets really hard as it is now really hard to care for him with bathing, dressing and everything being required. (occasional mess ups in the bathroom) So, I do not take off like I used too. I went to Copenhagen on a spare of the moment trip for 2 nights and 3 days in August 2018 that was my last get away. Like you I miss the spontaneity which my life used to have.

I get a lot of pleasure from people visiting us- for me that is almost as good as going away, makes for conversation and a change. This last six months I have had things done in my garden...the patio extended for more room for loungers, and put in a bed of lavender and 42 rose bushes. I am now in the phase that I have to accept that travel will not be part of my life...so I must just make my surrounding as holiday like as possible,,,,which is not difficult in Switzerland.

I take help whenever it is offered and when it is not offered I ask for it. He has been going two days each week to daycare now...which is wonderful. I have a carers in to help me for a few hours at a time, but that requires constant work....as they quit or find full time work. I have one lovely young man who walks with my husband for 3.5 hours twice each week in the mountains. He has worked for me for 5 years and is fab. The women who are sitters in the evening have proven much less loyal and reliable, and I am forever looking for new ones.

Good luck.
 
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Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
think he will most likely outlive me.
Your story really touches me and how brave and resilient you have been. Like you I am feel that he will outlive me. The disease struck us late in life and I have only had one year since diagnosis and about a year of worry before that, to struggle with his Alzheimer’s disease but it takes its toll in your late 70s. I have heart disease following a heart attack eight years ago, have recovered well but the only reason I don’t want to suffer a second fatal heart attack, which otherwise would be a blessing in light of what has happened to him, is to spare my children from having to take over the responsibility for their father. He is organically well having been a fitness enthusiast, traveled widely in his work and is a high functioning academic and it’s the dementia that will slowly kill him, not any other illness as things stand at the moment. In spite of my words life is good and I can still find glimpses of joy with my husband in amongst the sadness.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
It is not often that I read my story, but I think our lives must have been similar.
My husband lived and worked in 14 countries and was a great world traveler, trekker, mountaineer and sailor. An active guy. I, too, had lived and worked all over the world, all over the USA, Alaska and England and France. We then ended up in Switzerland not a bad place to be.

Like you, I have a strong sense of duty, and I do remember the love , but as his disease started so early and was not diagnosed immediately for what it was, we had very early years of lots of strife and the breakdown of our marriage. I had considered separation before the diagnosis. Once he was diagnosed at 49, it was easier to deal with as I knew it was Alzheimer's and not his fault and it gave me clarity. But financially because I still had all my children in studies at the time, the youngest was 11 it would have been difficult financially to dissolve the marriage. And of course, the professionals estimated he would live 10 years with Early ON Set.. as I was working for a big pharma company I got him onto a clinical trial where the drug was not brought to market but I do believe that it seriously slowed down his disease progression .....it has been almost 17 years! I thought I can do this for 10 years....but now it has gone on and on and I think he will most likely outlive me. I have had two bouts with leukemia now and although I can live and manage, the disease I am not as healthy as I was.

In the beginning, I would take off and leave and travel by just having the kids stay and asking relatives to stay. But that gets really hard as it is now really hard to care for him with bathing, dressing and everything being required. (occasional mess ups in the bathroom) So, I do not take off like I used too. I went to Copenhagen on a spare of the moment trip for 2 nights and 3 days in August 2018 that was my last get away. Like you I miss the spontaneity which my life used to have.

I get a lot of pleasure from people visiting us- for me that is almost as good as going away, makes for conversation and a change. This last six months I have had things done in my garden...the patio extended for more room for loungers, and put in a bed of lavender and 42 rose bushes. I am now in the phase that I have to accept that travel will not be part of my life...so I must just make my surrounding as holiday like as possible,,,,which is not difficult in Switzerland.

I take help whenever it is offered and when it is not offered I ask for it. He has been going two days each week to daycare now...which is wonderful. I have a carers in to help me for a few hours at a time, but that requires constant work....as they quit or find full time work. I have one lovely young man who walks with my husband for 3.5 hours twice each week in the mountains. He has worked for me for 5 years and is fab. The women who are sitters in the evening have proven much less loyal and reliable, and I am forever looking for new ones.

Good luck.
There are a lot of similarities in our stories but unlike you, I have managed to stay physically fit and active though I do struggle to deal with depression at times. And your husband was so young which is so very sad for you. I always think that this is just the worst thing about dementia, that no one can give us any idea of how long we as carers will have to battle on.

Two years ago I was able to go to Queensland for four nights for my sister's 80th birthday and left my husband on his own with checkups by my daughter. This year I spent two nights in Canberra with my sister but could only go because my granddaughter came stayed with my husband.

My husband still plays bridge and his partners pick him up which does make my life easier and he can still do a lot to care for himself. He does have heart failure which is worsening and a bigger concern than his Alzheimer's.

Funny thing about the roses! I have about fifty roses but I have decided to gradually remove them over the next few years. We have had the hottest and driest summer on record and I would no sooner get my roses to have a few blooms then we would have a stinking hot day and the roses would literally cook on the bushes.

So I am putting in a lot of native Australian plants that can survive the conditions a little better and as they get bigger, I will take a lot of the roses out though I will keep a few of my favourites.

I am pleased that you have some great support. And certainly you do live in a very beautiful country.
 

Swoodwa1974

Registered User
Jul 16, 2017
2
0
I cared for my Dad Ken from 2013 until
he went into a care home in July 2017, he passed away in Nov 2018. It was hard, particularly when he would shout, hit me and say horrible things about me to my face but I knew it was not his fault. A couple of days before he died a bit of my proper Dad cane back, he couldn’t talk but I seen it and knew it was him fighting to say goodbye through the illness, just a couple of times, I hold onto this and know he still loved me from that. Trust me it is worth staying and taking care. I miss him so much him every day..
 

Rencat

Registered User
Nov 15, 2018
13
0
I've been thinking today, why do we do what we do? Why do we sacrifice our lives for someone else? I don't have an answer. I know that whilst I love my OH I resent the fact that dementia has robbed us both of our lives. Why don't I walk away? Love? Duty? Guilt? Am I i worried about what other people will think? I don't know. I stay but I hate the situation I'm in & I often wonder if it makes any difference me being there or would anyone do?
Hi, I’m in the very same boat, illness has robbed me of my physical independence, but as a couple we were jogging on quite merrily until my partner had the devastating diagnosis only three months ago and she’s only 56. She’s my carer, we’ve no children and I rely heavily on her to physically help me but it’s getting more and more difficult as she just doesn’t understand what I’m asking of her.I only have a PA who helps me for three days a week and other than that it’s just the two of us. I’m terrified of the future and what will happen, not just to Rennie but also myself when, inevitably I’ll be left, disabled in a wheelchair and alone, I’m only 52. PS We’ve been together for twenty one years this year
 

Reggie4412

Registered User
May 21, 2016
7
0
@Lawson58 , are you sure we aren't twin sisters separated from birth?
Your words might have been written by me ( the only difference , my English is not so good as yours).
I care for OH both out of economic considerations and sense of duty ( or responsibility, as you say).
If I ever loved him, I no longer do. But that is a long story none of you is likely to be interested in.
We have been together for 18 years , married for ten years, and OH was diagnosed with Alzheimer's three years ago.
I have always loved travelling all over the world, both on my own and with OH.
Now I am under house arrest, which makes me exasperated and unhappy.

I wonder which is better ( or " less worse") , loving the person we have care for or being more detached ?
Your post
 

Vitesse

Registered User
Oct 26, 2016
261
0
My marriage vows was for richer and poorer in sickness and in health....
And I would like to think if it was me he would return the favour
I can only say that these are also my sentiments. My OH has Alzheimer’s and things are getting worse by the day. Recently there have been several days when I feel like giving up, but then I remember that it is not an option!! He needs me and I will not let him down!
 

Reggie4412

Registered User
May 21, 2016
7
0
Hi, I’m in the very same boat, illness has robbed me of my physical independence, but as a couple we were jogging on quite merrily until my partner had the devastating diagnosis only three months ago and she’s only 56. She’s my carer, we’ve no children and I rely heavily on her to physically help me but it’s getting more and more difficult as she just doesn’t understand what I’m asking of her.I only have a PA who helps me for three days a week and other than that it’s just the two of us. I’m terrified of the future and what will happen, not just to Rennie but also myself when, inevitably I’ll be left, disabled in a wheelchair and alone, I’m only 52. PS We’ve been together for twenty one years this year
I can quite understand how you’re feeling as I feel very much the same. I certainly didn’t sign up for this when I married my husband but can I leave him? No I can’t. Why? I really don’t know. Sometimes I feel so desperately sad for him. Sometimes I really resent what’s happening to me. I feel I’m changing in to somebody I don’t recognise any more. . Is this my life for the next 10 years? .....
 

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