I want to leave it all behind

dales18

Registered User
Apr 8, 2014
4
skipton
My partner is 64 and been diagnosed with vascular dementia and alzheimers. He thinks there is not much wrong with him and is quite happy for me to sort out everything now. I am feeling great resentment and frustration at the moment. He has become very possessive and I feel swamped and trapped. I can't respond to him anymore and am finding it increasingly difficult to carry on our relationship. I have talked to him about how I feel and he seems to understand but within a couple of hours he has completely forgotten our conversation.
I feel desperate that there is no way out because it would be so cruel to leave him since he needs so much support. what can I do?
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello Dales, and a warm welcome to Talking Point, a place of understanding,support and to get things off your chest,when ever needed:eek:
A lot us do feel so resentful when our hopes and dreams for the future and looking forward to retirement seem to go in a blink of an eye as dementia enters your life, your feelings are so very normal, we have both mum and mum in law with different forms of dementia and although we don't live with either of them it has invaded our lives, I did thing sometimes -in the beginning - yeah both of you did not need to look after your parents, you both had most of your retirement as planned! but you do need to try and live your life as best you can whilst you maybe be able to adjust to this different person, have a chat to your GP on all the options available and what help you can get from social services, respite is one of them,giving you the time to be yourself if only for a few days, your doctor will be able to arrange a referral(you can approach SS direct,but a GP referral speeds it up a lot) take a note of all the different changes going on, the challenges and above all share your concerns for the future, i am sure others will be along with their thoughts.
Take care and sending you a much needed hug
Chris
 

Eleonora

Registered User
Dec 21, 2012
170
Abingdon Oxfordshire
Hello Dales, and a warm welcome to Talking Point.
Here, you will find a huge resource of help and information dealing with all areas of care, treatment and financial advice. There is also, and most importantly, a wealth of friendship which, I found, helped me to get through the tough times.

I see that you are browsing the Forum; and from that, you will get a very good impression of what emotional resources are needed if you are to become a carer for a partner with AZ/Dementia.

You've both had a huge shock; and the two of you are struggling to come to terms with this devastating news.
It’s hardly surprising that your partner has become extra possessive. He is terrified, both about what is going to happen to him and his mind, and the possibility that you might leave him.

Possibly, the first thing you need to sort out in your own mind is, do you love him?
I believe that it is very hard road to care for someone with AZ/dementia without a great deal of love in place. Some members have managed it, but who would want to be cared for out of a sense of duty?

Your heading reads: ‘I want to leave it all behind.’ Most of us have cried that aloud in the wee small hours. It’s a very human reaction. If what you say is true, you will need to make up your mind very carefully. You will also want to make arrangements for his care.

On the practical side, it would be a good start to get his needs assessed by Social Services.
If he is no longer able to look after himself safely, you should get an assessment for yourself as his carer.
Citizens Advice or Age Concern helped me to make all the claims necessary to make life comfortable for my husband, and possible for me.

Take some time to consider your options. Please don’t rush into a hasty decision that you might regret.
Please keep posting, we’ll be here to listen, and help whenever possible.

Hugs to you both,

By the way, I was sixty eight when my husband showed his first signs of AZ/vascular dementia.
 
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TinaT

Registered User
Sep 27, 2006
7,095
Bolton
I was fifty eight when the world fell apart for me. I'm twelve years on now and my husband died two years ago but the last ten years have been the hardest of my life emotionally. Whatever you decide I'm sure people here on TP have been faced with the same emotions and feelings that you cannot cope with what life has thrown at you..

I know I was full of the emotions you are expressing. How could my life be put on hold like this? How could I be solely responsible for the care of a man who is now so needy of my attention that I was smothered by him and felt like exploding?

Slowly through the kindness, friendship and support I had here on TP and from a wonderful Admiral Nurse, I did work towards coping, albeit not in a very expert way and had many setbacks.

I also accepted all the help that social services could offer such as a day centre a couple of mornings a week which gave me a few hours respite. As the illness progressed I got further help from a carer coming in every morning for a few hours and later still my husband was admitted to an assessment centre and then on to full time residential care.

No one can advise you on this lonely path which way you should go. Only you can decide this after much excruciatingly difficult heart-searching. Perhaps my circumstances were very different to yours. We had been married a very long time and I do not think I had any other decision than to stick with it because I still loved my husband.

My heart goes out to you.

Best wishes
TinaT
 

Redpoppy

Registered User
Jul 31, 2012
268
Glamorgan s.wales
When I read your post it echoed the same feelings in my relationship with my husband
after 54yrs of marriage.Although he can safely be left on his own he isn't happy to see me out for longer than 1to 1 and half hours. Not long enough to go somewhere other than our own local shops,and I'm sure I know all the stock in all the shops by now.It's important you get out-be firm and tell him where you're going and when you'll be back. Hopefully you can arrange a sitter if needed.Like you I have taken over all our business affairs,and he gets well looked after by me. You have to ask yourself wouldn't he care for you to the best of his ability if you were in his situation-I know my husband would. He has been a good husband and father to our children and that's what helps me get through the bad days. You are a lot younger than we are,so you must do as you think best--nobody here would criticise you,whatever decision you make.I do hope things improve for you soon.
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
What can you do?

Ultimately, you can decide that you don't want to look after your husband any longer. No-one can be forced to look after someone else, whether they are related by blood or marriage or not related, or whether they love them or not. As others have said, no-one who has any experience of caring will criticise you.

It may help you, in thinking through this problem to follow these links:

http://www.dementiauk.org/information-support/admiral-nursing-direct/

http://alzheimers.org.uk/localinfo

The Admiral Nurses exist to help people caring for people with dementia. AS you will see, there's a direct phone line if there are no ANs in your area.

The second link will direct you to your nearest Alz Soc branch.

I sure you will also get a lot more support and advice on TP.
 

Spamar

Registered User
Oct 5, 2013
7,030
Suffolk
I can't remember whether i read it or someone told me, but if someone follows you everywhere it is because you are the person with whom they feel safe.
Several years post diagnosis my OH is only just reached this stage, which just goes to show what a mix up the disease is!
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
My partner is 64 and been diagnosed with vascular dementia and alzheimers. He thinks there is not much wrong with him and is quite happy for me to sort out everything now. I am feeling great resentment and frustration at the moment. He has become very possessive and I feel swamped and trapped. I can't respond to him anymore and am finding it increasingly difficult to carry on our relationship. I have talked to him about how I feel and he seems to understand but within a couple of hours he has completely forgotten our conversation.
I feel desperate that there is no way out because it would be so cruel to leave him since he needs so much support. what can I do?
I dare not tell you a conversation I've had on this very same subject; it would be too candid/graphic.

Dales, I have no idea how long you've been dealing with your situation. For me, we're just into our sixth year. I've been where you've been, said very similar things which also got forgotten. Every year, at a certain time,I want to make plans to leave, but I reason with myself at those times, for I know I could never do it.

It seems, now, that I've grown a bit more accustomed to the situation. I know I have to be with my hubby until the end. I no longer resent it. I used to. Very much. But these days, without knowing how, I just roll through each day.

There's the ever-present: I hope we make it through. Somehow, we do.

I come here in splurges. Sometimes, I just don't have the energy or the will. Sometimes, I want others to know I'm available if they need a shoulder, That's where I am at the moment. Always feel welcome here. It helps so much to have like-minded people to share with. Love to you.
 

dales18

Registered User
Apr 8, 2014
4
skipton
Thank you for all your support and understanding.I can see I am not alone.
My partner was diagnosed 6 months ago with dementia,although there were symptoms about a year before .
I feel I am at the panic stage and that I have lost control of my life at the moment.
It is very hard when my partner is constantly wanting to kiss and hug me and I cannot respond.The urge is to push him away,which would be mean ,but this is making me feel tense most of the time. I am trying to rationalise the situation but it is difficult to make him understand how I feel.
It was reassuring to read that others have lived through a similar experience and learnt to adjust and cope. I don't want to leave but I also want a life,which seems selfish but honest.
 
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Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Hi dales, and a warm welcome from me too. On the plus side, you've found this great site, and you will get loads of help and support from the other folk on here. But nothing can take away the shock, and despair on hearing that the person with whom you'd spent a huge chunk of your adult life has been diagnosed with this cruel disease.

All of a sudden, you're meant to go from sharing all tasks, rejoicing at the ups, consoling at the downs, to being a mixture of Joan of Arc, Mother Theresa, and Florence Nightingale.

I admit that there were many times when I wanted to run away from it all. I'd bite my lip, tongue, inside of my cheek, when asked for the millionth time "is it Thursday", or accused of hiding his keys, or his clothes, and John was very much inb denial for best part of 10 years.

Hang on in there sweetie, and ask whatever you like from your circle of friends on TP.
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Which is worse - the constant hugging, kissing, etc, when you can longer relate that way with your partner or the complete reversal of having a really loving man who suddenly rejects you and you become his worst enemy? No answer really. It's just horrible either way.

Sent from my GT-N5110
 

Alolla

Registered User
Mar 31, 2014
11
London
.....have a chat to your GP on all the options available and what help you can get from social services, respite is one of them,giving you the time to be yourself if only for a few days, your doctor will be able to arrange a referral(you can approach SS direct,but a GP referral speeds it up a lot) take a note of all the different changes going on, the challenges and above all share your concerns for the future, i am sure others will be along with their thoughts.
Take care and sending you a much needed hug
Chris
Chris, I was told that you cannot force someone to go into care if they do not want to go, and my husband refuses to go. Do you know what other options I have?

What type of GP referral are you talking about...a referral for respite for the carer? The SS person who came to our home asked if we had savings over a certain amount and when I said yes, she said, "Well, you're self-funding then. I can give you a list of homes in the area so you can find one and make your own arrangements." But, as I said before, he will not go.
 

Rathbone

Registered User
May 17, 2014
2,264
West Sussex
Just catching up with your thread Dales and sending loving thoughts and understanding. This amazing support network we have on TP will sustain you. My experience is that whatever the problem, there will be somebody (or many) who have lived it too. That in itself just helps to put things into perspective, which makes the way ahead so much easier to bear. Keep on posting, we are listening. X Loving thoughts.:)
 

dales18

Registered User
Apr 8, 2014
4
skipton
I am comforted to know that you have felt the same and have found a way through. I guess I want to stay but I need some way of controlling the situation.
I am fortunate to be able to have 1 to 1 with a counsellor at the moment who is helping me to work out my feelings and giving me an outlet for my frustration and anxiety.
The worst thing is the unpredictability of my partner's behaviour . Some days it feels like everything is normal then he will suddenly change and become very anxious and worried about something for no logical reason and I have to sort it out quickly before his anxiety escalates.
How does everyone cope without getting ill themselves?

I dare not tell you a conversation I've had on this very same subject; it would be too candid/graphic.

Dales, I have no idea how long you've been dealing with your situation. For me, we're just into our sixth year. I've been where you've been, said very similar things which also got forgotten. Every year, at a certain time,I want to make plans to leave, but I reason with myself at those times, for I know I could never do it.

It seems, now, that I've grown a bit more accustomed to the situation. I know I have to be with my hubby until the end. I no longer resent it. I used to. Very much. But these days, without knowing how, I just roll through each day.

There's the ever-present: I hope we make it through. Somehow, we do.

I come here in splurges. Sometimes, I just don't have the energy or the will. Sometimes, I want others to know I'm available if they need a shoulder, That's where I am at the moment. Always feel welcome here. It helps so much to have like-minded people to share with. Love to you.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
Chris, I was told that you cannot force someone to go into care if they do not want to go, and my husband refuses to go. Do you know what other options I have?

What type of GP referral are you talking about...a referral for respite for the carer? The SS person who came to our home asked if we had savings over a certain amount and when I said yes, she said, "Well, you're self-funding then. I can give you a list of homes in the area so you can find one and make your own arrangements." But, as I said before, he will not go.
Do you have LPA for finance and/or H&W? If you have the latter, you could ultimately make the decision where your partner lives. If he still has capacity, this should be a priority.

I found it so frustrating that because mum was self-funding we weren't apparently entitled even to advice from SS about what options there were for help but mum's CMHT nurse was a bit more helpful and through him we did get a referral for help from an OT with a view to persuading mum to try a specialist day centre. Never got there as her physical health declined too fast but worth a try for you.
 

Rathbone

Registered User
May 17, 2014
2,264
West Sussex
The unpredictability is part of this grim disease I'm afraid, Dales (I'm talking FTD); even the poor sufferer has no idea what's coming next. There is no second guessing it IMHO, and no controlling it either. In my experience, I have to stay alive to the potential for problems and try to "manage" a calm and peaceful environment - well, that's the theory! Even then the proverbial can hit the fan. Nothing is constant, get something in place and suddenly all changes. It's certainly not a dull life! Right now, bracing long walks seem to work wonders for both of us; things are piling up at home, but what the heck. Like anyone, I hope to avoid the bugs, but when I had a rotten flu virus recently which laid me low, my OH pulled out all the stops and helped ME! And the wonderful cyber friends on TP were always there pushing me along. Stay strong Dales. Your man will need your loving presence in his life more than ever now. It's good to talk it through and we are always here to lend an ear. X Chin up. :)
 

Alolla

Registered User
Mar 31, 2014
11
London
Do you have LPA for finance and/or H&W? If you have the latter, you could ultimately make the decision where your partner lives. If he still has capacity, this should be a priority.

I found it so frustrating that because mum was self-funding we weren't apparently entitled even to advice from SS about what options there were for help but mum's CMHT nurse was a bit more helpful and through him we did get a referral for help from an OT with a view to persuading mum to try a specialist day centre. Never got there as her physical health declined too fast but worth a try for you.
Thank you, Pickles53. Yes, I do have LPA for both finance and H&W. We are seeing his Memory Care OT in one week, and I will ask him about this.