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Patience with partner with dementia

0909j

New member
Jun 23, 2021
1
0
I am struggling to be patient with my husband who is deteriating diagnosed with cognative impairment 5 years ago. Through lock down has got worse... I don't want to make him feel worse than he does already.. My feeling for him are changing
 

nellbelles

Volunteer Host
Nov 6, 2008
9,264
0
leicester
Hello @0909j and welcome to DTP
Do you think it may be time for a reassessment of the diagnosis for you husband?
Dementia is a progressive illness so a new assessment might well be due.

It also sounds like the time for help with caring for your husband might be a way forward if you are finding things very difficult.
If you would like to talk to to someone I’ve added the following link

I hope now you have found the forum you will continue to post for support and to share your experiences..
 

Thethirdmrsc

Registered User
Apr 4, 2018
355
0
Hi @0909j its been extremely hard for me to change my behaviour to accommodate my OH‘s Alzheimer’s, it all seems to be him,him,him. However, I hope that you can get help, carers or a mental health nurse to visit to help you to help him. You need time out, and once you can get some headspace yourself, you might find you can cope better. My go to place is the loo, I lock the door and sit on the loo for 5 mins or so and silently scream. It’s hard though.
 

Cariad 42

Registered User
Dec 18, 2018
22
0
I am on a similar timeline to you though I realise this isn't an indicator in itself. Like you, lockdown has made a significant difference to how we live our lives, and I too have struggled with my feelings towards my husband - as the balance of our relationship changes. Our "love languages" are now so different and it's so hard to reconcile them.
For the last 15 months I have received counselling (through the memory clinic) and this has made such a difference to me. A time for me to understand more about me in a world that now has so little time for me - for the person I was, before Alzheimer's became our lives. I would encourage you to explore this type of support.
Also, we have recently just begun receiving regular caring support and whilst it takes some adjusting to, I can see the benefits already- for both of us.
I struggle to be patient (often) and also try to protect my husband from the reality of the life that is dementia. This means the pressure falls on my shoulders and this is hard - which is where the counselling helps.
I don't have any answers here, but your message resonated with me and I wanted to share a bit of my experience in the hope it might help 💛
 

Ridpathnan

Registered User
Dec 9, 2017
20
0
I am on a similar timeline to you though I realise this isn't an indicator in itself. Like you, lockdown has made a significant difference to how we live our lives, and I too have struggled with my feelings towards my husband - as the balance of our relationship changes. Our "love languages" are now so different and it's so hard to reconcile them.
For the last 15 months I have received counselling (through the memory clinic) and this has made such a difference to me. A time for me to understand more about me in a world that now has so little time for me - for the person I was, before Alzheimer's became our lives. I would encourage you to explore this type of support.
Also, we have recently just begun receiving regular caring support and whilst it takes some adjusting to, I can see the benefits already- for both of us.
I struggle to be patient (often) and also try to protect my husband from the reality of the life that is dementia. This means the pressure falls on my shoulders and this is hard - which is where the counselling helps.
I don't have any answers here, but your message resonated with me and I wanted to share a bit of my experience in the hope it might help 💛
Thank you so much x
 

Ridpathnan

Registered User
Dec 9, 2017
20
0
Thank you I know we are just starting the journey into dementia ....and it scares me that I wont be able to handle my own feelings towards my husband ....I have never been blessed with patience, but I am working hard to tell myself that he can't help whats happening to him...I seem to have the knack of making him feel worse than he should.
I want to show my daughters that I can lovingly care for their father.
I feel a very bad person at the moment
 

Ridpathnan

Registered User
Dec 9, 2017
20
0
Hello @0909j and welcome to DTP
Do you think it may be time for a reassessment of the diagnosis for you husband?
Dementia is a progressive illness so a new assessment might well be due.

It also sounds like the time for help with caring for your husband might be a way forward if you are finding things very difficult.
If you would like to talk to to someone I’ve added the following link

I hope now you have found the forum you will continue to post for support and to share your experiences..
 

ganymede

Registered User
Apr 28, 2021
56
0
Thank you I know we are just starting the journey into dementia ....and it scares me that I wont be able to handle my own feelings towards my husband ....I have never been blessed with patience, but I am working hard to tell myself that he can't help whats happening to him...I seem to have the knack of making him feel worse than he should.
I want to show my daughters that I can lovingly care for their father.
I feel a very bad person at the moment
Hi @Ridpathnan, I see my Dad going through this as he cares for my Mum. His patience will snap - he isn't a saint - and the more he lets his frustration show, the more anxious and upset Mum becomes and it can start a downward spiral for the rest of the day. It is more than any human being should be asked for.

What Mum doesn't see is the hundreds of small things Dad quietly does for her every day. They are the expression of his love and care for her. It makes me sad that she can't see them. But if there's someone who can step back for a moment, maybe they can give you some reassurance? Those hundreds of good things do weigh in the balance against the cross words and the moments that don't go so well. I hope you can see that ... sometimes
 

northumbrian_k

Registered User
Mar 2, 2017
1,382
0
Newcastle
Something that is often mentioned as helpful is an approach known as Compassionate Communication. Details of this are below. I was not great at following it and, although others commented on my patience, that is not how it felt to me. My top tips are don't reason, argue or explain. Don't expect the person to do what is needed. Try to keep your frustration to yourself. And say and demonstrate that you love and care through your actions and words. It is not easy but better to accept and ignore anything bizarre than to challenge or try to change it.

 

JayDeeEmm

Registered User
Mar 29, 2020
19
0
Thank you I know we are just starting the journey into dementia ....and it scares me that I wont be able to handle my own feelings towards my husband ....I have never been blessed with patience, but I am working hard to tell myself that he can't help whats happening to him...I seem to have the knack of making him feel worse than he should.
I want to show my daughters that I can lovingly care for their father.
I feel a very bad person at the moment
You are not a bad person. We have all / are going through the same emotions. You just want to do your best and not let your loved one down. I promised my husband that I would always make sure he received the best treatment possible. However there are times when I don't like what the medics have to say or suggest, but I tell myself if it is the best thing for him, then Ill agree to it. Like you I feel I at times that I'm causing him to feel worse, but that's probably because we are their nearest and dearest, and they vent their feelings on us and not strangers. Accept all the help you are offered as it is a lonely journey and having others to support you makes a big difference. Good lluck.
 

LindaE

New member
Jan 25, 2021
1
0
I too am struggling with dealing with the changes to my husband who was diagnosed just over three years ago with Alzheimers. He is still very fit and enjoys playing tennis and cycling which I am sure are helping him to ward off the progress of the illness. He also makes model aeroplanes from kits which is becoming quite an obsessive hobby but at least he is happy and occupied. I have just read the 'Compassionate Communication with the Memory Impaired' information that another reader has added and it is so helpful but at the same time overwhelming. How do you remember to say and act the right way all the time? Will it get easier? I do get time to myself during a week which I appreciate that I need but I guess I am fighting the fact that my life will be different from now on, which is very challenging as well as accepting the loss of my husband of 49 years, who is now now acting as a different person to the one I have known all my married life. I have been told that I am going through a grieving process for the loss of our relationship as it has always been. I feel I need to be able to speak to a third party or counsellor regularly but do not know where to turn to. I have lots of friends and family who say they will listen anytime but I find it hard to off load onto them. I have tried to talk to my husband about how I feel but realise now that this is not helpful for him and I do not want to upset him unneccessarily. I have asked him to share with me how he is feeling at certain times so I can try and help but this does not happen either. It all seems so difficult but so good to have this forum to realise that there are lots of us dealing with the same sad issues.
 

Pots and Pans

Registered User
Jan 13, 2020
79
0
Oh gosh, so much of this resonates @LindaE My OH is just not the man who I have shared my life with for over 45 years. I wish he would play tennis or cycle or make models .. sadly his chief activity seems to be finding key/wallet/glasses several times a day. 3 years ago he was jogging! Now can only shuffle around ( we have wheelchair if we go out). He can't work phone, remote, music system, any form of tablet.... I hate to see the lost or puzzled look on his face, hate to see him struggle to put his shoes on, feel so desperately sorry for him. Yet... also hate the daily verbal abuse (physical threats too) , hate that I can barely go out - certainly not without worrying - and can't help but be upset myself when he forgets who I am or much of our past together. This to me is the cruellest side of the illness. Good luck to everyone dealing with similar. Most of you I feel do far better than I do - compassionate communication is not my forte!

I can only add to what everyone says. Take any help offered and don't be afraid to ask for help. What has given me some sanity is joining some of the Alzheimer's activities locally. Have also just been offered some support via carer assessment from council (we have no family to help) so am hoping this will work out and would recommend anyone to explore this. Also carer support local to me offer free counselling over the phone. Not sure if this would work for me as hard to get privacy for a call but well worth exploring if your PWD is at a stage where they can be occupied elsewhere. Ditto carer support groups starting up again and just like this forum loads of tips from other carers likely.
 

Rosie Apple

New member
Aug 2, 2020
9
0
I have felt exactly as several have described about struggling with being patient. It's a vicious circle, I can see very clearly that, my own difficult feelings, all rub off on MH and make him worse. I could never have imagined some of the grief, guilt and resentment I now feel . And I , as all of you, did not choose any of this. After a particularly bad day, I asked for a carer assessment and , after a long chat, SS asked me if I thought counselling would help. They have offered to arrange 6 sessions. I haven't had them yet, but I intend to do so. They may or may not help but surely it is worth a try?
 

Veritas

Registered User
Jun 15, 2020
92
0
Hi @Ridpathnan, I see my Dad going through this as he cares for my Mum. His patience will snap - he isn't a saint - and the more he lets his frustration show, the more anxious and upset Mum becomes and it can start a downward spiral for the rest of the day. It is more than any human being should be asked for.

What Mum doesn't see is the hundreds of small things Dad quietly does for her every day. They are the expression of his love and care for her. It makes me sad that she can't see them. But if there's someone who can step back for a moment, maybe they can give you some reassurance? Those hundreds of good things do weigh in the balance against the cross words and the moments that don't go so well. I hope you can see that ... sometimes
Well, this made me feel much better after the patience wore very thin last night. Thank you :)
 

JaxG

Registered User
May 15, 2021
11
0
It is such a relief to hear that others feel the same. I have known my husband for 40 years but he is an angry stranger. He finally got a diagnosis a year ago but I could see the changes for many years. I do what I do for him because it is the right thing but I can honestly say he has been so abusive to me at times that I no longer love him. He is resentful that I have to control his life, he is resentful that I do not have dementia and that I still have some life outside the house. I have contacted the local Carers Hub and they have been really helpful, and it is good to know that there is support. I have found that the only thing that helps and reduces his anger is if I don't ask anything of him but this has meant that I do everything. I feel that this has taken both our lives and it is depressing to know that things will only get worse. It's a terrible situation for everyone but I feel that as the carers we can be overlooked.
 

Jan L

Registered User
Mar 26, 2020
91
0
Thank you I know we are just starting the journey into dementia ....and it scares me that I wont be able to handle my own feelings towards my husband ....I have never been blessed with patience, but I am working hard to tell myself that he can't help whats happening to him...I seem to have the knack of making him feel worse than he should.
I want to show my daughters that I can lovingly care for their father.
I feel a very bad person at the moment
You aren't alone with those feelings. My Husband has had early onset Dementia for 20 years, I noticed the changes in him because I had seen his Father go the same way 30 years earlier. He wouldn't admit it to himself so wouldn't go to the Doctor for a diagnosis. I eventually got him there 7 years ago when he was diagnosed with Alzheimer's Disease/Vascular Dementia, Moderate/severe respectively. His condition now is that he is unable to speak or understand what you say, he can't find his way around the house, when I get him to the bathroom he doesn't know what to do. I have to put his knife and fork in his hands and cut everything up for him, his mobility is very poor too only being able to walk about 100 yds. He has me in and out of bed 3/4 times in the night so I don't get any solid sleep and am going around like a Zombie most of the time. When I try to help him at the toilet he sometimes starts hitting out at me, and the look on his face can be quite frightening. I am having problems not retaliating so I have a lot of pent up anger, I'm not one for being bullied (although I do realise he can't help it). The independent, kind, gentle, happy man I married is no longer there and it is so many years now since our relationship started changing I can barely remember what is was like.

I am trying to pluck up courage to get carers in to get him up in a morning, that would reduce one point of conflict and I can get on with sorting myself out and getting the breakfast while they shower and dress him but I don't like having other people in my home and working to there timetable. This last 18 months have been difficult, to put it mildly, trying to cope on my own and like everyone else say it has accelerated the deterioration in his condition and I am older too. Family occasions are coming up which I am going to have to miss, I can't cope with him in an hotel now, I booked a holiday with our walking group 12 months ago, not knowing what the situation would be in September this year. Apart from the fact I haven't walked at all for the last 18 months because I can't leave him and have had no one to stay with him, I don't think I can find the courage to put him into respite. Being now in my mid 70's I feel my own life ebbing away unfulfilled.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,571
0
Nottinghamshire
Hi @Jan L

I know how you feel about carers. I was very reluctant to bring them in for my dad although I was really struggling with keeping him clean. When I eventually got an agency involved I wondered why I hadn’t done it months earlier. They were wonderful with dad and very efficient. I didn’t live with dad but it was such a relief to not have to face the morning personal care battle when I arrived. It felt like a huge weight had been lifted.

If you don’t like the carers you don’t have to continue with them. Why not give it a try?