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When is the right time for carers to say enough is enough?

wightdancer

Registered User
Mar 15, 2017
67
What a variety of hurdles we carers have to overcome. My wife who was diagnosed with Alzheimer's in 2014 goes to bed at about now, 11.30-12.00 ish but will get up several times until maybe 2am so I stay up ready to meet her and put her back to bed. I have medication to help her sleep and medication to keep her calm but she spits it out most of the time and if i try to add it to anything after grinding it down she will say it tastes bad and spit it out too. Unfortunately she can no longer engage in conversation so I have to guess what she is feeling/needs etc., She is unable to even brush her teeth and won't let me do it but her hygienist still manages to clean them every couple of months. Pretty much everything has to be done for her even spoon feeding .
She eats and drinks less and less and has lost weight but still can walk unsteadily with help..
17 months ago we went on a cruise and although she was forgetful and had to be accompanied all the time she could put on her makeup, do her hair, choose clothes, get dressed, feed herself and have a bit of conversation. The speed of deterioration is scary, she does not know my name now or the names of any family/friends and is basically oblivious to what is happening...........all in 17 months!
My concern is that I am keeping her at home for selfish reasons because i don't want to lose her to a care home but maybe in a care home she will get more stimulation and really a better quality of life than a constant one on one with me and family visitors who just confuse her trying to talk with her and grandchildren who she gets agitated around.

Accepting that i would be happy to have my dear wife stay with me at home as long as I can cope am i doing the best thing for her?
 

Graybiker

Registered User
Oct 3, 2017
217
County Durham
Hi Wightdancer,
Your final question? Only you can answer. I have never cared for a partner,
I only helped care for my mam who still lived with dad until 2 years ago, so I can only relate my experience.
Being honest, mam was nowhere near the stage you are at. She still talked, walked, danced, dressed & ate unaided. However she did need 24hr care which dad was unable to give.
She went into a very good home, tricky at first, but eventually thrived. The routine & company were good for her. I remember her telling me she had never had so many friends. But, that was her, she was very social.
I suppose what I’m trying to say is, a home is not the end of the world, mam & dad still had pizza night on a Friday etc, home very accommodating.
I’m not sure how much selfishness comes into it, someone with more experience in your particular situation will reply I’m sure.
Wishing you well x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,814
Kent
Hello @wightdancer

When I was caring for my husband I wanted him at home with me for as long as I could meet his needs. I was mistaken in thinking I would be able to meet his needs until the end of his life.

Selfishness didn`t come into it. I honestly believed home was best even when he didn`t know or recognise his own home.

Sadly the time came when I couldn`t meet my husband`s needs, which was when he began to lose his mobility, didn`t remember this and had many falls.

He did benefit from being in residential care. He did enjoy the hustle and bustle of the home even if he resisted joining activities. He had said he was lonely at home with me and he never said he was lonely in his care home.

You are the only one who can make this decision and I hope you will be able to make the best one for both your wife and yourself.
 

Alex54

Registered User
Oct 15, 2018
322
Newtown, Wales
as long as I can cope am i doing the best thing for her?
Hi, I am in the same situation as yourself. All I can say is that as long as my wife is reasonably happy and not in any pain then I will continue to look after her at home. We have used respite twice before and on both occasions, it did not work out well. I guess if the respite had been a positive experience then the decision would be much harder to make.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,053
Bristol
How sad to read of your wife's demise @wightdancer.
The decision on what to do for the best is a hard one. We live in supported accommodation, so there are carers coming in twice a day to help with cleaning teeth and suchlike. My partner will accept that easier from them than from me. She also goes to day centre one day a week for stimulation and to give me time to socialise. I don't know if your wife would go to somewhere or accept outside carers, but just suggesting it as a half way house instead of moving her into care at this stage.
 

Pete1

Registered User
Jul 16, 2019
868
Hi @wightdancer, I'm really sorry to hear about the seemingly rapid decline of your wife, it is surprising how the effects of this dreadful disease erode away - when you are dealing with care day to day it is often less apparent than it is to someone who sees our loved one occasionally, so those changes must be difficult to accept. The one key thing you haven't mentioned is how you are - how are you feeling physically and emotionally? It sounds as though you are going it alone. so it must be extremely challenging for you and you do matter in this too. If you want to keep your wife at home you could look at other options such as home care, day centres etc, this might help you and provide additional stimulus to your wife. Stay strong.
 

northumbrian_k

Registered User
Mar 2, 2017
1,041
Newcastle
I was in a similar position this time last year @wightdancer . My life was almost entirely dedicated to and driven by my wife's ever growing needs, with the exception of about 5 hours one day per week. That was when a home support person visited to 'look after the dog'. She had tried a day centre but she refused to go back. She had been on short residential respite stays and seemed to enjoy them. It was whilst she was in respite that I gave serious thought to the possibility that she might be cared for better by a team of people rather than one increasingly frazzled husband. I looked at a few care homes, found one that I thought would suit her and arranged a trial stay. I did this with a heavy heart but a clear head. As soon as the trial began I knew that she would not be coming back home. I am convinced by all that has happened in the 10 months that she has been in her new home that I did the best thing for her, for me and for our rekindled relationship.

Only you can say if residential care will be best for your wife. You will know when you are ready to pass on some of the caring to others, hopefully before you have become exhausted by the effort of keeping everything going. Residential care can be a good option. Recognising this is not failure but practical realisation of needs. How to go about it is another matter, driven not least by funding.

I hope this is helpful. There are many posts by myself and others that show that residential care in the right setting can be a positive experience.
 

Penelope Pitstop

New member
Feb 17, 2020
7
As others have said only you and your circumstances decide. I had no choice my mother lived with me but I was working shifts in a stressful job. It wasn't safe to leave her. So although her dementia wasn't too bad it simply wasn't safe for her to be on her own. She was a wanderer leaving doors unlocked, trying to dry clothes in the oven.
You have to consider your sanity as well. I was heart broken that my mother got dementia but had no choice. I couldn't afford to give up work. She is settled in the home. They do become institutionalised with expectations of meals at certain times. But she actually told someone the other week she couldn't live at home any longer. That made me feel better.
So everyone's journey is different. I commend you for what you have done so far. If you decide a home is right, do it, don't feel guilty. You can visit whenever you want for as long as you want. There are no restrictions. Think of your own health and sanity, it's your life as well.
 

wightdancer

Registered User
Mar 15, 2017
67
Thank you everyone for your advice. I will plough on and see how we manage. My wife used to attend Day care centres 2 days a week but even that respite was stopped because they said she would undo her seat-belt and that contravened Health and Safety rules. Too far for me to do a 2 way journey.
 

Hazara8

Registered User
Apr 6, 2015
512
Thank you everyone for your advice. I will plough on and see how we manage. My wife used to attend Day care centres 2 days a week but even that respite was stopped because they said she would undo her seat-belt and that contravened Health and Safety rules. Too far for me to do a 2 way journey.
It is completely understandable that you wish to maintain the current situation in respect of your wife remaining at home. In fact it becomes moreso in these situations because of the care and reliance combined. The intensity of a relationship evolving out of dementia makes the notion of separation almost unthinkable. However, it is clear from your posts that you have the insight and obvious heartfelt consideration which looks to the possibility of a Care Home should the need arise.
Every case is different. That cannot be overemphasied. Nor can the seemingly somewhat cliched " best interests " quote, because the fact remains that you wish for precisely that in any circumstances. One thing l can state without hesitation, is that new residents coming into the Care Home in which l frequent as a volunteer, require a " settling " process.
This "settling" if enabled by proper care and trained awareness of the condition in question, can prove to be not just positive but often beneficial in terms of alleviating what was once stressful, confusing or frightening a world even when at home. Dementia allows forgetfulness to eliminate what could be genuine despair or fear. When memory in short-term has gone, there is a freedom from angst. When living moment to moment in a regime initiated by a properly organised Home environment, you can often find genuine cases of calm and " contentment" ongoing, due to ongoing CARE. I can say that when my late mother was rushed into " emergency respite" it was profoundly upsetting. I do not have to elaborate, but it was by any standards traumatic and extremely difficult. Yet, after about three months there was a transformation. No longer the anxiety and apprehension prior to my daily visits, no longer the phone calls to inform me of "events" or the painful lingering at the door as she called for me in a state of distress and so on. Instead visits became an extension of how things had been earlier on at home, before the Alzheimer's presented.
The disease in it's ironic way gave mother a " here and now " existence. I would arrive and take hold of her hand and talk just as if l had never left. There was often no " hello " or " goodbye " because it had no meaning.
And when she relapsed into her earlier life as if it were happening now, you acknowledged it by accepting it as FACT and in so doing maintained the calm equilibrium of the netherworld into which she now resided. And maybe tomorrow that would change. But you did not worry about tomorrow's events, simply cherished the present and the moment which was filled with smiles and maybe laughter and the squeezing of a hand, to affirm that deep and profound affection which requires not a single word.
 

andreasss86

Registered User
Dec 10, 2019
17
Hi @wightdancer I can see that you're received plenty of great answers from everyone here. Let me share my thoughts too... To answer your question, enough is when you feel enough is. It's truly sad to hear of how fast your wife is deteriorating. I've posted here in the past about a similar situation that I've been in with my grandmother. Her condition was getting increasingly worse - not at a very high rate. Taking care of her was beginning to take a toll on my family and I until we decided to hire a carer at home for her. We've hired this lady from Guardian carers and that has improved her life and subsequently ours. You say how you don't want to lose her to a care home. Have you considered having someone come in a few days a week or even to live in? It would be a person that she would get to know progressively and get used to having around. I think that this may be an option which could work.
 

wightdancer

Registered User
Mar 15, 2017
67
It is completely understandable that you wish to maintain the current situation in respect of your wife remaining at home. In fact it becomes moreso in these situations because of the care and reliance combined. The intensity of a relationship evolving out of dementia makes the notion of separation almost unthinkable. However, it is clear from your posts that you have the insight and obvious heartfelt consideration which looks to the possibility of a Care Home should the need arise.
Every case is different. That cannot be overemphasied. Nor can the seemingly somewhat cliched " best interests " quote, because the fact remains that you wish for precisely that in any circumstances. One thing l can state without hesitation, is that new residents coming into the Care Home in which l frequent as a volunteer, require a " settling " process.
This "settling" if enabled by proper care and trained awareness of the condition in question, can prove to be not just positive but often beneficial in terms of alleviating what was once stressful, confusing or frightening a world even when at home. Dementia allows forgetfulness to eliminate what could be genuine despair or fear. When memory in short-term has gone, there is a freedom from angst. When living moment to moment in a regime initiated by a properly organised Home environment, you can often find genuine cases of calm and " contentment" ongoing, due to ongoing CARE. I can say that when my late mother was rushed into " emergency respite" it was profoundly upsetting. I do not have to elaborate, but it was by any standards traumatic and extremely difficult. Yet, after about three months there was a transformation. No longer the anxiety and apprehension prior to my daily visits, no longer the phone calls to inform me of "events" or the painful lingering at the door as she called for me in a state of distress and so on. Instead visits became an extension of how things had been earlier on at home, before the Alzheimer's presented.
The disease in it's ironic way gave mother a " here and now " existence. I would arrive and take hold of her hand and talk just as if l had never left. There was often no " hello " or " goodbye " because it had no meaning.
And when she relapsed into her earlier life as if it were happening now, you acknowledged it by accepting it as FACT and in so doing maintained the calm equilibrium of the netherworld into which she now resided. And maybe tomorrow that would change. But you did not worry about tomorrow's events, simply cherished the present and the moment which was filled with smiles and maybe laughter and the squeezing of a hand, to affirm that deep and profound affection which requires not a single word.
Wow, thank you; read it twice but I am going to read your message a few more times and will respond.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Thank you everyone for your advice. I will plough on and see how we manage. My wife used to attend Day care centres 2 days a week but even that respite was stopped because they said she would undo her seat-belt and that contravened Health and Safety rules. Too far for me to do a 2 way journey.
Hi
Just a thought .. is there a liquid option for this medication.
couldn’t read & run
Hope life gets easier a little
X
 

wightdancer

Registered User
Mar 15, 2017
67
It is completely understandable that you wish to maintain the current situation in respect of your wife remaining at home. In fact it becomes moreso in these situations because of the care and reliance combined. The intensity of a relationship evolving out of dementia makes the notion of separation almost unthinkable. However, it is clear from your posts that you have the insight and obvious heartfelt consideration which looks to the possibility of a Care Home should the need arise.
Every case is different. That cannot be overemphasied. Nor can the seemingly somewhat cliched " best interests " quote, because the fact remains that you wish for precisely that in any circumstances. One thing l can state without hesitation, is that new residents coming into the Care Home in which l frequent as a volunteer, require a " settling " process.
This "settling" if enabled by proper care and trained awareness of the condition in question, can prove to be not just positive but often beneficial in terms of alleviating what was once stressful, confusing or frightening a world even when at home. Dementia allows forgetfulness to eliminate what could be genuine despair or fear. When memory in short-term has gone, there is a freedom from angst. When living moment to moment in a regime initiated by a properly organised Home environment, you can often find genuine cases of calm and " contentment" ongoing, due to ongoing CARE. I can say that when my late mother was rushed into " emergency respite" it was profoundly upsetting. I do not have to elaborate, but it was by any standards traumatic and extremely difficult. Yet, after about three months there was a transformation. No longer the anxiety and apprehension prior to my daily visits, no longer the phone calls to inform me of "events" or the painful lingering at the door as she called for me in a state of distress and so on. Instead visits became an extension of how things had been earlier on at home, before the Alzheimer's presented.
The disease in it's ironic way gave mother a " here and now " existence. I would arrive and take hold of her hand and talk just as if l had never left. There was often no " hello " or " goodbye " because it had no meaning.
And when she relapsed into her earlier life as if it were happening now, you acknowledged it by accepting it as FACT and in so doing maintained the calm equilibrium of the netherworld into which she now resided. And maybe tomorrow that would change. But you did not worry about tomorrow's events, simply cherished the present and the moment which was filled with smiles and maybe laughter and the squeezing of a hand, to affirm that deep and profound affection which requires not a single word.
 

wightdancer

Registered User
Mar 15, 2017
67
Thank you for your thought provoking post, it has allowed me to think a lot clearer and to better understand my situation.
Much appreciated.
 

wightdancer

Registered User
Mar 15, 2017
67
Hi @wightdancer I can see that you're received plenty of great answers from everyone here. Let me share my thoughts too... To answer your question, enough is when you feel enough is. It's truly sad to hear of how fast your wife is deteriorating. I've posted here in the past about a similar situation that I've been in with my grandmother. Her condition was getting increasingly worse - not at a very high rate. Taking care of her was beginning to take a toll on my family and I until we decided to hire a carer at home for her. We've hired this lady from Guardian carers and that has improved her life and subsequently ours. You say how you don't want to lose her to a care home. Have you considered having someone come in a few days a week or even to live in? It would be a person that she would get to know progressively and get used to having around. I think that this may be an option which could work.
Thank you, I am definitely at a fork in the road with the choice of care home or carer; the path I will take this time is live-in carer and see how we get on . My desire to stay with my wife is overwhelming so at least I will have a semblance of normality for a bit longer. Thanks again.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Thank you, I am definitely at a fork in the road with the choice of care home or carer; the path I will take this time is live-in carer and see how we get on . My desire to stay with my wife is overwhelming so at least I will have a semblance of normality for a bit longer. Thanks again.
A sensible option, you will always know you explored every avenue
Xx
 

Lladro

Registered User
May 1, 2019
123
It is completely understandable that you wish to maintain the current situation in respect of your wife remaining at home. In fact it becomes moreso in these situations because of the care and reliance combined. The intensity of a relationship evolving out of dementia makes the notion of separation almost unthinkable. However, it is clear from your posts that you have the insight and obvious heartfelt consideration which looks to the possibility of a Care Home should the need arise.
Every case is different. That cannot be overemphasied. Nor can the seemingly somewhat cliched " best interests " quote, because the fact remains that you wish for precisely that in any circumstances. One thing l can state without hesitation, is that new residents coming into the Care Home in which l frequent as a volunteer, require a " settling " process.
This "settling" if enabled by proper care and trained awareness of the condition in question, can prove to be not just positive but often beneficial in terms of alleviating what was once stressful, confusing or frightening a world even when at home. Dementia allows forgetfulness to eliminate what could be genuine despair or fear. When memory in short-term has gone, there is a freedom from angst. When living moment to moment in a regime initiated by a properly organised Home environment, you can often find genuine cases of calm and " contentment" ongoing, due to ongoing CARE. I can say that when my late mother was rushed into " emergency respite" it was profoundly upsetting. I do not have to elaborate, but it was by any standards traumatic and extremely difficult. Yet, after about three months there was a transformation. No longer the anxiety and apprehension prior to my daily visits, no longer the phone calls to inform me of "events" or the painful lingering at the door as she called for me in a state of distress and so on. Instead visits became an extension of how things had been earlier on at home, before the Alzheimer's presented.
The disease in it's ironic way gave mother a " here and now " existence. I would arrive and take hold of her hand and talk just as if l had never left. There was often no " hello " or " goodbye " because it had no meaning.
And when she relapsed into her earlier life as if it were happening now, you acknowledged it by accepting it as FACT and in so doing maintained the calm equilibrium of the netherworld into which she now resided. And maybe tomorrow that would change. But you did not worry about tomorrow's events, simply cherished the present and the moment which was filled with smiles and maybe laughter and the squeezing of a hand, to affirm that deep and profound affection which requires not a single word.
Thank you Hazara8 so much for your words on this post.
Today has been an absolute nightmare and I have taken much solace from your words regarding care home stay.
I know this is coming for my wife and it scares the hell out of me.
Your words made me cry - and also helped me.
I clearly need to cry and can only hope that our forthcoming experience of cherishing the moments will be as precious as you say yours were. Thank you.
Lladro
 

AliceA

Registered User
May 27, 2016
2,858
Perhaps the right time for relinquishing the care role is before the emergency situation.
We are at that stage now, my heart breaks at the thought but my head knows now is the time to consider and prepare.
I have found a place, short respite breaks went well.
I think at home, many old responsibilities that can no longer be understood let alone be dealt with give an underlying anxiety, however happy we try to make the environment.
When my husband was in respite we had some lovely times together, he sat chatted and held hands.
Other times I felt a bit in the way as he did not want to miss out on things going on. Nothing much in my eyes but of great interest in his.
A happy limbo, the antics of others absorbed him.
There is a bed available but a hitch as it just over the border.
In the quiet times I feel I can manage, then an incident shows I cannot.
You have my empathy, Lladro, Hazara8 is wise, we do indeed get sucked in by this illness making any separation seem more unbearable than ever. AliceA x
 

wightdancer

Registered User
Mar 15, 2017
67
It is completely understandable that you wish to maintain the current situation in respect of your wife remaining at home. In fact it becomes moreso in these situations because of the care and reliance combined. The intensity of a relationship evolving out of dementia makes the notion of separation almost unthinkable. However, it is clear from your posts that you have the insight and obvious heartfelt consideration which looks to the possibility of a Care Home should the need arise.
Every case is different. That cannot be overemphasied. Nor can the seemingly somewhat cliched " best interests " quote, because the fact remains that you wish for precisely that in any circumstances. One thing l can state without hesitation, is that new residents coming into the Care Home in which l frequent as a volunteer, require a " settling " process.
This "settling" if enabled by proper care and trained awareness of the condition in question, can prove to be not just positive but often beneficial in terms of alleviating what was once stressful, confusing or frightening a world even when at home. Dementia allows forgetfulness to eliminate what could be genuine despair or fear. When memory in short-term has gone, there is a freedom from angst. When living moment to moment in a regime initiated by a properly organised Home environment, you can often find genuine cases of calm and " contentment" ongoing, due to ongoing CARE. I can say that when my late mother was rushed into " emergency respite" it was profoundly upsetting. I do not have to elaborate, but it was by any standards traumatic and extremely difficult. Yet, after about three months there was a transformation. No longer the anxiety and apprehension prior to my daily visits, no longer the phone calls to inform me of "events" or the painful lingering at the door as she called for me in a state of distress and so on. Instead visits became an extension of how things had been earlier on at home, before the Alzheimer's presented.
The disease in it's ironic way gave mother a " here and now " existence. I would arrive and take hold of her hand and talk just as if l had never left. There was often no " hello " or " goodbye " because it had no meaning.
And when she relapsed into her earlier life as if it were happening now, you acknowledged it by accepting it as FACT and in so doing maintained the calm equilibrium of the netherworld into which she now resided. And maybe tomorrow that would change. But you did not worry about tomorrow's events, simply cherished the present and the moment which was filled with smiles and maybe laughter and the squeezing of a hand, to affirm that deep and profound affection which requires not a single word.
Thank you Hazara8 for your positive and reassuring statements that clearly come from your heart. I have today started the process to get a carer to come and live with my wife and myself. Your heart rending comment " the painful lingering at the door as she called for me in a state of distress" was my tipping point and I now have absolutely no doubts that I am doing the best thing. Thank you again, I will let you and everyone know how we get on in this new adventure. All the best.