Hi Everyone I am new to this and probably pretty new to my husband having a Dementia,

[Jeanie7872]

Hi Everyone
I am new to this my husband has had three major strokes and now Dementia, it’s over 16 years
But the Dementia I am really struggling with, he has no loving side to him anymore and was such an affectionate man.. I feel anger all the time, I am full of guilt all the time I have no help, and he’s double incontinent and needs changing about 4/5 times a day...
I just feel my whole life is over and I really do love him so much BUT like I say feel anger all the time..
We have been married for 35 years and 16 years ago I thought I’d lost him But he pulled through with no speech and couldn’t walk.

We got though all that speech was better and was walking again, then he had another and another and now the Dementia. Please if anyone can talk me through HOW I STOP feeling this anger I really would appreciate it Jeanie

 

[T1993r]

Hello, sorry you are having such a horrendous time. I know what you mean with the anger, I am lucky that I have a sister who I can vent to. It feels good just to be able to say exactly how I am feeling and what I am thinking without worrying about being judged. You are entitled to feel angry but you have to find a way to let it out.

 

[nae sporran]

Welcome to TP, Jeanie.
The anger is understandable and has been described on here as a form of grief for what you have lost even while the one you care for is still here. I was so isolated and struggled so badly last year I ended up going to a counsellor who definitely helped me develop some ways of coping.
You also say you have no help with caring. Have you asked Social Services, assuming you are in the UK, for a carers assessment for yourself and a care needs assessment for your husband ? Having care workers in a couple of times a day to help with personal care, and maybe getting help with incontinence pads or pull ups may take some of the strain. The latter is something your GP could help with.
Sorry that's a muddled reply. This forum has so many with better ideas than I have, but you are not alone when you are here and if you need to vent we are here to listen.

 

[Manc70]

Hello Jeannie, I’m afraid I don’t think I will be much help but want to add my support to you. I agree with nae sporran that I think the anger is a form of grief, you feel heartbreak for what your husband is suffering but also miss the life you Both could have had. I am not going through anything as difficult as you but I get that feeling of anger towards my husband and the situation we are in, it feels so helpless and frustrating. Then we have to suppress the feelings and get on with things - not a good mixture for our wellbeing. On a practical level could you start off by letting your GP know that you are finding things difficult and hopefully they will know the agencies to refer you to for some help. I’m fairly new to this so not yet sure what is out there. I hope you find some peace from this very understandable anger. Kind Regards x

 

[marionq]

Anger, frustration, resentment, despair - people use these words lightly at times but when it comes to dementia they only touch the surface. It is a very bad place you are both in Jeannie and you will need all the support you can get from friends and family and also from social services to help you get some sort of life for yourself.

I learned to never refuse help even though it wasn't always just what I needed. I found that making contacts through SS and other groups involved, was a way of finding a path through our problems. Help sometimes came from unlikely sources. I have a friend in Wales who was a flat mate half a century ago when we lived and worked in New Zealand. We only loosely kept in touch. After John developed dementia she phoned every week to let me rant and rave and occasionally cry with despair. She never failed and in those early years I badly needed that. I remember around year three of his diagnosis sending her flowers because I realised how important she had been in giving me that outlet.

Talk to TP when you need to offload and hopefully someone will recognise your situation and have some advice to give based on experience.

Best wishes.

 

[Grannie G]

Hello @Jeanie7872

You've been caring for your husband for half your married life and it seems as if now the dementia has developed, it has caused him to lose his loving and affectionate side towards you.

The loss of emotion and empathy is one of the most upsetting symptoms of dementia in so many people. We as carers are expected to give so much and little or nothing is given in return.

I don't know how you stop being angry but perhaps the anger may ease if you managed to get some help. As Marion said, take as much help as you can get, you have struggled alone for far too long.

Contact adult social services. Let them visit and make an assessment of yours and your husband's needs.

 

[GinnyJan]

Hi Jeanie. Let a lot of that anger out on here, it really does help and there is no judgement.

The incontinence problem is one your GP should be able to guide you through. Sometimes pads/pants are available through them but where I live it was a different agency and they were brilliant. I hope you have a spare room though because they get delivered in huge amounts about every three months

Lack of empathy from the person with dementia (PWD) is common - something I still find very difficult to deal with. If I feel ill, and voice the thought, I'm met with an uninterested stare or a comment about something completely different.

Don't allow yourself to feel guilt on those occasions you wish your other half far away....it's normal to feel like that, I think we all do at times.

Seek help from Social Services if you need it, that's what they're there for. I haven't got to that point yet, but reading on various threads on here, there are good Social Workers and some not so good - fingers crossed for you.

Keep reading the forums (as and when you have time to yourself) and rant away, there's always someone to listen and send a virtual (((hug)))
xx

 

[LynneMcV]

What a heart breaking situation you find yourself in Jeanie.

My goodness, you are a strong lady to have coped so long, supporting your lovely husband through such all-consuming health issues over much of your married life, nobody could doubt your love for him.

If course there is anger - and when dementia enters the picture it is hard to deal with that anger because we cannot expect our loved one to understand why we are angry, to understand that it is the situation we are angry at, not them - let alone knowing that there isn't anything that can be done to resolve the matter.

I was very lucky in as far as my husband did maintain the loving side of his nature for the most part but I do recall the bitter sting on occasions when a different side emerged, though thankfully those episodes were sporadic rather than the norm. It is so easy to be kind and loving when our loved one is able to do the same - but so much more testing when that love and empathy appears to have left them.

As others have said, it is advisable to bring in others into your lives so that this strain is not always falling upon your shoulders. I appreciate that not everyone wants to have carers coming in and maybe you fall into that category and is the reason you are going it alone right now? If so, remember that help comes in many different ways.

In my case I found a wonderful day centre for my husband to attend. He enjoyed his break from being under my gaze and I enjoyed a chance to do things for myself a few hours each week. We also joined groups to attend together - not all of them dementia related but all of them compassionate about supporting carers and their loved ones. We made some great friendships there and those friendships have helped keep me going over the past few weeks since the loss of my husband.

Please do think about how you can share your load with others - it is not a sign of weakness to do so but a sign of sensible planning to make sure you both get the support and outlets that you both deserve and need.

And do keep posting on TP - I have found a wealth of support and knowledge here over the past six years and as a result, I have never felt that I was alone, day or night.

 

[Blodski]

Hello
I can totally relate to your feelings of anger. As many have said, it's a form of grief. My mother was diagnosed 4 months ago but is already in a care home as my Dad could no longer look after her. I'm fairly new to this forum too, but already it has been so helpful and provides an outlet to say how you are really feeling. People on here will understand, won't judge you and above all, will support you. I would urge you to use it as much as you can because it can be a lifeline. x