Ten years on

sandman 28

New member
Jan 8, 2023
9
0
Thank you @sandman 28 .

There are others on the forum who have been doing this for longer than me or for two people. I have no idea of how they do that.

But in many ways I have not had it as bad as some others as my husband can still do lots of things for himself. It has been stressful for me dealing with our relationship as well as all the other non dementia health issues he has.

Is there anything in particular that stresses you? I hope that you can arrange to get some help for yourself.
Hi just everything at the moment ive got my own health issues but its like they dont exist my wife's had breast cancer got the all clear after therapy and then diagnosed with AD its been a constant 6 years of caring im worn out also find it extremely difficult to find people of a similar age
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
Hi just everything at the moment ive got my own health issues but its like they dont exist my wife's had breast cancer got the all clear after therapy and then diagnosed with AD its been a constant 6 years of caring im worn out also find it extremely difficult to find people of a similar age
You have really been through the wringer and dealing with dementia is very different to caring for someone with cancer. I guess you were already worn out before the dementia became difficult to deal with. I hope that you are accessing all the different sorts of assistance that are available to you. I don’t live in the UK so can’t point you in the right direction,
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,765
0
Hi just everything at the moment ive got my own health issues but its like they dont exist my wife's had breast cancer got the all clear after therapy and then diagnosed with AD its been a constant 6 years of caring im worn out also find it extremely difficult to find people of a similar age
Hello @sandman 28 I am so sorry that you are feeling so worn out, but that is no wonder with all that you have been through recently.
Do you have help looking after your wife, if not please get into contact with your local adult social services to arrange a needs assessment for your wife and a carers assessment for yourself. Please let them know just how overwhelmed you feel. It might also be a good idea to contact your GP regarding your own health issues.

I have attached a couple of links that might be of help to you, one regarding care assessments and one for the Admiral Nurses who support carers.


 

Chizz

Registered User
Jan 10, 2023
3,506
0
Kent
Hi @Lawson58
It's good to know that you are getting so much enjoyment from your dogs.

Being a full time carer like @sandman 28 - first 2 years with my wife's multiple myeloma bone cancer, then straight on to Alzheimer's, total now 7 years - full frontal exhaustive caring until I got in some carers to relieve me and so I can have some breaks - is very intense and emotionally waring.

However, having done the full time caring bit whilst my wife's abilities have gone almost to zero, and knowing this could still go on for years, the last thing I would want would be to take on another baby - such as puppy!
It takes all sorts. So best wishes to you!
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
Hi @Lawson58
It's good to know that you are getting so much enjoyment from your dogs.

Being a full time carer like @sandman 28 - first 2 years with my wife's multiple myeloma bone cancer, then straight on to Alzheimer's, total now 7 years - full frontal exhaustive caring until I got in some carers to relieve me and so I can have some breaks - is very intense and emotionally waring.

However, having done the full time caring bit whilst my wife's abilities have gone almost to zero, and knowing this could still go on for years, the last thing I would want would be to take on another baby - such as puppy!
It takes all sorts. So best wishes to you!
It’s worth every moment!
 

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Mike Doncaster

Registered User
Dec 16, 2022
18
0
It’s been ten years since my husband had his cardiac arrest at home. Ten years since I resuscitated him and gave him a few more years of life.

Ten years since I committed to looking after him without knowing what I was really doing, that nobody warns you about that caring is really going to suck the life out of you. Ten years since We got the diagnosis of Alzheimer’s. And the everything in between, the nosebleeds, the hernias and the internal bleeds, and the constant warfarin tests. not to mention podiatrist and the dentist, and the caratacts.

Ten years of living my life to accommodate his problems with out a thank you or some sense of appreciation or gratitude…just this is what I need , do it,, not counting the three years before when our marriage selfdestructed with the early signs of dementia.

In other words, I feel I have wasted ten years of my life.. And can’t stand the thought of another year, doing the same. I just can’t reconcile spending another year caring for him when all he thinks about is what goes in his mouth and comes out the other end and his bridge.
,
I understand that I am at burnout but I also realise because he can microwave food and look after his personal hygiene that he is nowhere being considered for care. It’s as simple as the length of time has taken its toll, not all the nonsense and criticisms and paranoia..

I struggle to find the energy to get up and do anything anymore. But he doesn’t understand that. He thinks if he takes the pup for a walk , it will solve everything. He probably couldn’t restrain him anyway and then that becomes one more thing for me to worry about, the pup I mean, not him.

i know that because he is still functioning well even ten years after, that help for me is non existent. His expression of tonights brief discussion was that I was the know it all so there was no discussion to be had was there!

Iam done. I am cooked, I have nowhere to go except where I have already been before.
I realise that it is now some time since you posted your cry for help and God knows we are all drowning in a sea of despair. One thing that is abudantly clear from from the numerous correspondents is that we carers all suffer horendously whilst the dementia sufferer presents in so many different ways and has no knowledge of their frailties. I have posted previously so will not go over ground already covered. My wife is now in her third care home, two were unable to cope with her tendancy to violence. She spent a spell in hospital where she was Sectioned. Visits became very difficult as she had no understanding that there was anything wrong with her and when I came to leave she would cling to me demanding that I take her home. So for two months or more I didn't visit, just made regular phone calls asking after her. This week I visited her. Now I am assailed by a sense of guilt. She has changed so very much. A shadow of her former self. I have a photo of her taken in the day care centre she went to on the Queens Jubilee. By Sept of the same year she was in full time care and a photo of she and I at the Christmas party, she was dancing the teddy bear she carried everywhere on her knee. Her descent seems so rapid and so now being brought up abruptly by her most recent appearance makes me profoundly ashamed of myself for having ducked visiting her. She's disappearing before my very eyes. Our loved ones are dying in slow time. I should have spent more time with her but couldn't. I spent an horrendous time caring for her at home before eventually I admitted defeat and she went into care. A scene many of us know. I was a mental wreck for over a year after. I think that was at the root of shying away from visits. What I am trying to say is don't wreck your health mental and physical. This disease takes a terrible toll on both parties and none of us will ever get over it.
 

Exmoor222

New member
Apr 16, 2023
4
0
I can only add my admiration for your resilience.
So many of us recognise all you,very said.
I found out today that carrer burnout ,ill health is no reason for help!
My oh was taken into hospital last night after a very bad period of behaviour,now I,m on a guilt trip.......
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,765
0
@Exmoor222 I am so sorry to read that your OH has been taken into hospital, please so not feel guilty, this is not done lightly.
You mention carer burnout - so I am assuming that is how you are feeling at present. There is help out there but it can be hard to find. First of all I would suggest that you speak to your GP about how you feel. If you have not already done so please contact your adult social services and explain that you have reached carer burnout and ask for an urgent review of your situation.
Also keep in contact with the social worker at the hospital, it may be that the time has come for your OH to go into a care home if you can no longer manage their needs.
If you can give some details about your situation it might be possible to suggest other options.
You might find it useful to talk over your situation, so i have attached a link to the Alzheimer's Society's help desk, i have contacted them in the past and they were so helpful.

 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
I realise that it is now some time since you posted your cry for help and God knows we are all drowning in a sea of despair. One thing that is abudantly clear from from the numerous correspondents is that we carers all suffer horendously whilst the dementia sufferer presents in so many different ways and has no knowledge of their frailties. I have posted previously so will not go over ground already covered. My wife is now in her third care home, two were unable to cope with her tendancy to violence. She spent a spell in hospital where she was Sectioned. Visits became very difficult as she had no understanding that there was anything wrong with her and when I came to leave she would cling to me demanding that I take her home. So for two months or more I didn't visit, just made regular phone calls asking after her. This week I visited her. Now I am assailed by a sense of guilt. She has changed so very much. A shadow of her former self. I have a photo of her taken in the day care centre she went to on the Queens Jubilee. By Sept of the same year she was in full time care and a photo of she and I at the Christmas party, she was dancing the teddy bear she carried everywhere on her knee. Her descent seems so rapid and so now being brought up abruptly by her most recent appearance makes me profoundly ashamed of myself for having ducked visiting her. She's disappearing before my very eyes. Our loved ones are dying in slow time. I should have spent more time with her but couldn't. I spent an horrendous time caring for her at home before eventually I admitted defeat and she went into care. A scene many of us know. I was a mental wreck for over a year after. I think that was at the root of shying away from visits. What I am trying to say is don't wreck your health mental and physical. This disease takes a terrible toll on both parties and none of us will ever get over it.
Carer burnout can take a long time to recover from and grief at what is happening to your wife exacerbates your emotional state. Others don’t really understand that dementia has the worst impact on carers than just about anything else and how it destroys your soul.

Feeling guilt because you can’t bear to see her is not being fair on yourself. You understand what is coming and seeing her as she is now must be awful. Sadly too, you know there is nowhere else for her at the moment and I guess you feel you abandoned her. Not true. This is her third care home and that should tell you how difficult she is to manage.

We are all frail and flawed human beings and all of us need yo forgive ourselves when we think we have failed.

Rest is the only cure for burnout. Sleep when you need it and as often as you need it. I wish you peace.
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
Very mixed thoughts and feelings at the moment.

OH had an appointment with our lovely GP today. OH went to sleep briefly in the middle of it.
The GP discussed introducing an extra medication into OH’s regime, a drug that has been around for years for treatment of diabetes. In recent times, it has been found to help heart patients live longer and OH may eventually be able to drop off one of the other drugs.

I feel confused about it all in that if it prolongs his life, what are the implications for his dementia?
Of course GP felt obliged to offer him the opportunity to live longer but my concern is about the quality of life or lack of it as the dementia progresses and selfish enough to contemplate with some trepidation the future. All those unanswerable questions - how long, how bad will the dementia be,
and all those other things I am reluctant to put down in writing.

OH is still mobile, cares for his own personal hygiene, continent and lots more.

The old question of how long is a piece of string?
 

sdmhred

Registered User
Jan 26, 2022
2,152
0
Surrey
Oh @Lawson58 i get your mixed feelings here. Has the GP given you time to think this through? Is your OH able to process this decision? I hate the fact these decisions now rest on my shoulders 😢😢

Last year mum had to have lots of non invasive checks on her heart. I had such mixed feelings. I didn’t want them to find something that they treated as it seems to me a quick heart attack is a painless way to go. Nothing found.

Im still finding the weight of these issues difficult. Mum is now virtually bedbound but what has really shocked me is that she still has quality of life, when I go and visit she is all smiles and says she has had a good day. she loves her food and seeing her family (altho she is confused who they are).Prior to dementia she would have hated to be this way but is now dealing with it with good grace and contentment.

This perhaps is the only place to offload the difficulty of these decisions.
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
Oh @Lawson58 i get your mixed feelings here. Has the GP given you time to think this through? Is your OH able to process this decision? I hate the fact these decisions now rest on my shoulders 😢😢

Last year mum had to have lots of non invasive checks on her heart. I had such mixed feelings. I didn’t want them to find something that they treated as it seems to me a quick heart attack is a painless way to go. Nothing found.

Im still finding the weight of these issues difficult. Mum is now virtually bedbound but what has really shocked me is that she still has quality of life, when I go and visit she is all smiles and says she has had a good day. she loves her food and seeing her family (altho she is confused who they are).Prior to dementia she would have hated to be this way but is now dealing with it with good grace and contentment.

This perhaps is the only place to offload the difficulty of these decisions.
If our GP said to my husband to run around the block and then do 10 handstands, he would try to do it. My husband heard the words about living longer and of course decision made! He trusts our GP as I do and I never felt that it was my decision to make anyway. Our GP says that OH should have been dead years ago which I think encouraged him to offer it. And I have to wonder if I made a decision would it have been for the right reasons.

These things get complicated when I saved his life after a cardiac arrest, that, somehow there’s a hallowed reason why you would never say no, that you are responsible for their wellbeing.
 

JaxG

Registered User
May 15, 2021
796
0
If our GP said to my husband to run around the block and then do 10 handstands, he would try to do it. My husband heard the words about living longer and of course decision made! He trusts our GP as I do and I never felt that it was my decision to make anyway. Our GP says that OH should have been dead years ago which I think encouraged him to offer it. And I have to wonder if I made a decision would it have been for the right reasons.

These things get complicated when I saved his life after a cardiac arrest, that, somehow there’s a hallowed reason why you would never say no, that you are responsible for their wellbeing.
@Lawson58 I completely share your feelings. What is the point, why medicate someone who can no longer live independently, who has a terminal disease? What on earth is the point of prolonging this sort of life? This decision affects your life and you have a right to an opinion. I've recently had a similar conversation with our doctor, and thankfully she is on the same page and has said there is no point continuing to prescribe statins since my husband's abilities are so limited. Having said that I am getting texts to check his blood pressure which I have ignored. Surely I should be getting messages to check my blood pressure while I am still healthy? But no they do this after the event - pointless.
My husband has deteriorated significantly in the last 8 months. He is not incontinent, can be left alone for short periods, but can not make decisions about what to eat, what to wear, cannot manage his meds, gets lost outside the house, has almost no functioning and sits staring into space much of the day, or sleeping. He has no idea if it is day or night and needs support every minute of every day. He has no short term memory and almost no independent functioning. I am absolutely exhausted - he is in respite at the moment and it has taken me 10 days to regain my strength - mental and physical, I feel destroyed.
 

Blissy

Registered User
Jan 29, 2023
114
0
I also know just how you feel. At the moment I have made the decision to just do what is necessary to keep my husband comfortable without too much medical intervention. He is totally dependent on me but although his mobility is poor we still get out every day. He was in hospital with sepsis last year and the consultant in intensive care had the usual discussion about do they resuscitate should it come to that. He explained that if they did then he wouldn't return home and would need 24hr nursing care so with the families agreement they would not do so. I was so relieved that someone had taken that decision from me. My husband recovered but dementia had taken quite a dip.
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
@Lawson58 I completely share your feelings. What is the point, why medicate someone who can no longer live independently, who has a terminal disease? What on earth is the point of prolonging this sort of life? This decision affects your life and you have a right to an opinion. I've recently had a similar conversation with our doctor, and thankfully she is on the same page and has said there is no point continuing to prescribe statins since my husband's abilities are so limited. Having said that I am getting texts to check his blood pressure which I have ignored. Surely I should be getting messages to check my blood pressure while I am still healthy? But no they do this after the event - pointless.
My husband has deteriorated significantly in the last 8 months. He is not incontinent, can be left alone for short periods, but can not make decisions about what to eat, what to wear, cannot manage his meds, gets lost outside the house, has almost no functioning and sits staring into space much of the day, or sleeping. He has no idea if it is day or night and needs support every minute of every day. He has no short term memory and almost no independent functioning. I am absolutely exhausted - he is in respite at the moment and it has taken me 10 days to regain my strength - mental and physical, I feel destroyed.
That‘s the thing though, my husband is much more able than yours. I can leave him alone for several hours and in fact I go out every day. He chooses what to eat (vegetarian) from the ready meals in the fridge and still prepares them for himself. He is still playing bridge both at the club and online. There are lots of things he can’t do but after 10 years, his progress is slow. I couldn’t in any way get him into respite because he simply would refuse, not understanding that respite is to benefit me.

He still manages his meds, though prescriptions are a different matter. He takes the old dog for two walks a day.

I believe that my husband’s cardiac issues are far worse than the dementia and our GP and I often have discussions about the situation. This being the case, he couldn’t ignore the chance to improve things for my husband and I understand that he had a responsibility to offer the new drug.

I have to say he has been my greatest support over the years and I can talk about certain things with him that I would never say to anyone else. He is happy to make time for me to have discussions with him about my husband’s condition without bothering about things like POA. I also know that he took my opinion into account.

Generally, my situation is very different to most others on the forum. That doesn’t make years of caring any less tiring and the thought of more of the say
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
I also know just how you feel. At the moment I have made the decision to just do what is necessary to keep my husband comfortable without too much medical intervention. He is totally dependent on me but although his mobility is poor we still get out every day. He was in hospital with sepsis last year and the consultant in intensive care had the usual discussion about do they resuscitate should it come to that. He explained that if they did then he wouldn't return home and would need 24hr nursing care so with the families agreement they would not do so. I was so relieved that someone had taken that decision from me. My husband recovered but dementia had taken quite a dip.
It sounds as if the consultant was very honest with you about your husband and that he seems to have been sensitive to the issues regarding a terrible situation for you and your family.

The morning after my husband had the cardiac arrest at home, the director of intensive care came and saw me and had a similar conversation with me. While OH was in an induced coma, they had no idea if he had suffered brain damage or to what extent if any. He indicated to me that no decision would be made without further discussion with me and that if he was going to have life support turned off, then they would wait for 4 days before doing so just to make sure.

He was gentle and very honest and he somehow conveyed the information in a way that made me feel capable of dealing with it if it came to that. He actually inspired me to complete an Advanced Care Directive so my kids don’t have to have the same conversation.
 

Chizz

Registered User
Jan 10, 2023
3,506
0
Kent
Generally, my situation is very different to most others on the forum. That doesn’t make years of caring any less tiring and the thought of more of the say
Hi @Lawson58
From what you say about your OH being reasonably high functioning, and that his mental deterioration is v slow, I'm sorry to say that it appears you will have many more years of the same to deal with.
I hope you will be able to keep your spirits up with your puppy, and daily goings out. We all feel for you.
 

Lawson58

Registered User
Aug 1, 2014
4,369
0
Victoria, Australia
Hi @Lawson58
From what you say about your OH being reasonably high functioning, and that his mental deterioration is v slow, I'm sorry to say that it appears you will have many more years of the same to deal with.
I hope you will be able to keep your spirits up with your puppy, and daily goings out. We all feel for you.
Thank you for your kind thoughts. Part of me acknowledges that OH has a right to take this opportunity, the other part provoked some rather grim thoughts.

But since writing the first post on this thread, I think I have been able to grab back a ’life’ of my own, restricted in many ways but better than it was. In some ways, I have surprised myself a bit but I think the rebel in me is emerging again.

If I don’t do it now, I might not get the chance again.
 

Silversally

Registered User
Aug 18, 2022
116
0
Thank you for your kind thoughts. Part of me acknowledges that OH has a right to take this opportunity, the other part provoked some rather grim thoughts.

But since writing the first post on this thread, I think I have been able to grab back a ’life’ of my own, restricted in many ways but better than it was. In some ways, I have surprised myself a bit but I think the rebel in me is emerging again.

If I don’t do it now, I might not get the chance again.
Good for you! Grab every opportunity to enrich your days. You have made huge sacrifices over such a long time.
 

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