Struggling with my husband's dementia

BethRebecca

Registered User
Jan 6, 2013
19
0
76
Somerset
Hi, my husband was diagnosed with dementia about 3 years ago and I had to shove hard to get him into the system. He is now taking rivastigmine and the doctors hope that this will help him. He is 78 and really wants to just sit in the armchair, read thrillers and sleep, he can sleep for England. He seems quite normal if you just have a light conversation with him but it is the other things like his memory and the fact that he can't do anything slightly complicated. We've only been together 12 years and his family who are spread all over the country think there is nothing wrong with him (one is a doctor) and I understand their denial but they think I am using him as a scapegoat for my own depression which has come on since he began behaving slightly oddly about 6 years ago. I'm tired but I get very angry and frustrated at times. He won't go to any groups and the group near me, here in Glastonbury, seems to be to have fun and not be able to discuss any problems we are having. I feel a bit isolated as he seems not that bad. thanks for listening
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Good morning and welcome to TP. I'm glad you've found the forum - especially as you don't seem to have any other support. My husband, who is 82, has Alzheimer's and is also on Rivastigmine. He was diagnosed almost 12 years ago though. To begin with he didn't want to go to any groups etc. He accepts this now but I think that's because his Alzheimer's has progressed. His memory is really quite bad now.

I wondered if you had gone through a carer's assessment or if your husband has had an assessment of needs. I imagine he won't be keen for that to happen given how you say he feels about groups etc. Would he go along to a group if you went with him to begin with?

Please keep posting here. You will find lots of help and support - albeit of the virtual variety.
 

rajahh

Registered User
Aug 29, 2008
2,790
0
Hertfordshire
I can relate to a lot of what you are saying.

My husband is 79 now, and not on medication through choice. I feel I am isolated too by not being able to have proper discussions with him about day to day affairs, or indeed anything really.

He always misunderstands what I am trying to say and I walk out into the kitchen numerous times a day saying Jeannette when will you learn not to start a conversation with him.

At long last though his daughter does recognise there is a problem but does not really offer any help for me. She does visit, but only for an hour or so once a fortnight, and she rings him once or twice a week.

Our new GP was not very helpful when he first came on the scene but has now taken on board the problem I have and is prepared to talk to me about all the difficulties and other illnesses my husband has.

It is a very lonely place though.

My husband sits most of the day, reading the Radio Times sometimes on the right page, sometimes not, and he sleeps on and off all day long.

He does go to a Day Centre once week but under protest. He does realise it is not to give him pleasure but to give me a day off.

He now regards me as the " catering sergeant" more often than not but still sometimes knows I am his wife, but he does not recognise here as his home either.

I have counselling for this and this keeps me " sane" or as sane as I ever will be.

I do get low, but I always seem to manage to rise above it, especially when I am supported on here by the great TPers.

Jeannette
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Hello BethRebecca,

I would like to offer you a warm WELCOME to Talking Point. I have found this site to be a lifesaver in the past when I was a carer to my late husband. I still find it supportive now. It is not only very informative , it is also extremely supportive and friendly.

It does sound like you are very much lacking support. I would suggest that you made contact with your local branch of the Alzheimers Society and ask to meet one of their representatives. They will more than likely be very familiar with your kind of situation and they often have wonderful local support for both the carer and the cared for. They are very non-judgmental and eaily approachable.

In the meantime I hope you can familiarise yourself with Talking Point and feel the benefit of some of what it has to offer:)

Love
 

benjie

Registered User
Apr 14, 2009
347
0
north staffs
I know exactly where you're coming from - don't know where we're going to - especially in this snow:D! Anybody know anything of that yellow disc that used to appear in the sky? I need it now because we've been snowed in without any care workers since Thursday night and my car is stuck in the lane about 1/3 mile away (we live about 2/3 mile off the main road).

Anyway that's by the by. My hubby doesn't seem to want to know about daycentres or anything like that. He has been in respite care twice but not on the dementia ward that's where I get my release. Hopefully soon relatives will come to their senses before it's too late and hubby needs to be in care home.

Whenever I feel angry/frustrated with anyone - including family I try to get onto this site. At first to have a rant/cry or whatever and always got nothing but caring words and support. Now when I feel that way I come on, read other posts and feel better for seeing so many in the same situation and get support and ideas from there.

You're always welcome here however you feel. Taking each day as it comes and taking pleasure from some of the silly little things that happen - and remember why you are with this wonderful person you are caring for - he's still there somewhere, just a bit lost.

Lots of hugs:)
 

Jenijill

Registered User
Mar 12, 2012
223
0
Guildford
My husband was also diagnosed 3 years ago - Vas D and Alz. He's been on Aricept ever since, which helped initially, although now I'm not at all sure how much it helps but then I don't know how he'd be without it.

He sleeps a lot of the day, starting straight after breakfast and continuing through to bedtime! He does still know who I am and where we live, but conversations are practicallly non-existant. Like you, Jeannette, I start conversations then instantly regret it as he either doesn't answer or completely misunderstands what I am saying! I find I'm always biting my tongue when I want to share some news item or family news - and that is the worst bit, the loneliness of not having anyone to talk to.

He goes to day centre twice a week and seems to enjoy it (he was extremely reluctant at first) although I'm told he sleeps a lot there. He 'won' £1.50 on bingo on Monday but didn't know it as he was asleep, so the helpers made sure he got his prize :D

His son visits about once a fortnight for an hour, but doesn't ring inbetween. His daughter doesn't ever visit - she has agoraphobia (or so she says) but when we went to see her, she only talked to me, not her dad, and that was only to tell me all her problems! She doesn't seem to know how to talk to her dad, but in any cards she sends it's all (my DARLING DADDY!!!)

This site has been my life-saver, and although I don't post that often, I read it everyday and have learnt so much and feel really part of a very special group of people who all share and understand the problems we all have.

Jenny
 

Taz

Registered User
Jul 7, 2007
118
0
Sussex
Hi,

Welcome to TP, this is an amazingly helpful place and has been a real life saver at times for me and the advice from folk here has helped me in so many ways.

Dad has Early Onset Multi-Infarct Vascular Dementia. He was diagnosed in 2008 after being incorrectly prescribed drugs for arthritis which caused mini strokes and we had to fight tooth and nail to get the Doc (same one who prescribed the wrong drug) to refer him for tests. In the end Mum paid for Dad to have a brain scan which showed up what had happened and the Consultant immediately transferred him onto his NHS list.

Mum cared for Dad at home until he had two hip breaks at the end of 2011. Since then it has been even more of a nightmare, but that's a whole other story :mad:

Looking back, Mum now says that she should have accepted the help that was offered i.e go to carers meetings, have Dad go to a day centre etc because when he was still at home she would get so frustrated with him and at times very angry and bitter about the fact that this disease was robbing her, and them as a couple, of their life.

Now she would give anything to still have him at home but at the time she often used to get quite snappy and have a go at Dad when he couldn't do something or if he asked her for the umpteenth time about the same thing etc. She also got very unpleasant and bitter towards me (never my brother, again that's a whole other story :rolleyes:) and my husband and regularly told me with delight how she had had a go at people she bumped into who knew Dad was ill but hadn't phoned her to ask after him (usually distant family members).

Fact is, Mum coped extraordinarily well with the practical stuff, Dad was always looked after, well fed and comfortable. However, she as his primary carer clearly needed emotional support but that wasn't available in our area unless she went to a group or had Dad put into respite (no way would she do that, she point blank refused). Mum would not 'allow' us to sit with Dad to give her a break, the only time she would let that happen is if she had to go for an appointment herself. Mum doesn't use the Internet either so apart from their CPN and us when she would let us, she had very little support and the system was happy to let her get on with it.

Everyone has different needs and coping abilities but the one thing that shines through from almost everyone who is a carer is that you need some time for yourself, even if it's only an hour to wander aimlessly around the shops. That hour can make all the difference, I just wish my Mum has listened and accepted that she needed to have a break.....maybe now she wouldn't feel the way she does as she keeps beating herself up about all the times she lost her temper with Dad.

X
 

optocarol

Registered User
Nov 23, 2011
315
0
Auckland, New Zealand
Hi Beth Rebecca,

Like many here, I have found TP so helpful and supportive. My husband is 81, diagnosed about 18 months ago, but I had my suspicions long before that. (We've been married 10 years only.) He is not that bad either and one of the things I find annoying is that people who talk to him for a relatively short time think he's ok and believe everything he says as he sounds so plausible. Half of it's wrong, but even if I said so, they don't know which half!

I also find it hard to cope when he gets a fixed idea about something e.g. at the moment, he thinks something he wants is in a vehicle which is at the panelbeaters. It's not and even if it were, I'm not driving there when it will have to be collected soon anyway and it's not at all urgent. I find I have to be thinking before I speak all the time, so that I don't mention something that will remind him and it starts all over again.

Plus, as Jeanette said, forget the idea of logical conversations!

I sometimes go to a support group run by the AZ Society, which I do find good too.I know he wouldn't go to any groups as he says there's nothing wrong with him, although he does seem to be revising this opinion lately. He not on any medication as he refuses to take it.

Hope you find TP some help to you.
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
I am sorry to hear about your husband, but it is good he is still able to enjoy reading when he can. I wondered if he would accept "sitters" to stay with him while you went out and had a break? He may not be at the stage when he would be amenable to this: I know my mother wouldn't initially but now she doesn't seem to mind other people coming into the house to stay with her while I go out.

I found this link. Forgive me if you already know about this:-

http://www.somerset.gov.uk/irj/publ...id=/guid/40211a22-0937-2c10-7a8f-fc00dbabf7a3

Have you looked into getting any carer's support, such as groups for relatives or counselling? It can be very hard caring on your own day in day out. I do hope you can get some more support.

Do you get much help from the medical people - i.e. does your husband have regular appointments with the memory clinic or dementia specialist? I wonder if his medication needs reviewing if he is sleeping a lot. On the other hand, dementia sufferers can be prone to this. Does he have a CPN? From my experience, it can be quite difficult to get one unless the person has behavioural problems.
 

zeeeb

Registered User
All of us here understand the stresses and pressure you would be under. If anyone wants to tell you otherwise, they are incredibly ignorant and rude. perhaps ask them if they can possibly take some annual leave, come and take care of him for two weeks while you take a break. If the answer is no, or excuses, tell them to sod off with their opinions about something they obviously know nothing about.

I cant understand how anyone would try and minimise this. It is the most heart wrenching, difficult, stressful things a family can go through.

My thoughts are with you. You are doing a fabulous job.
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
Hi Bethrebecca,

My wife, Sharon, is now midway through the final stage of this disease. But looking back I would say that I found the stage you and your husband are at to be the most frustrating and difficult. You start to question your own sanity because others don't see the problems that you are so aware of. And you are just coming to terms with the changes, but as soon as you have accepted where things are they change again. Often times, well meaning friends and relatives pressure you to attend events or go places because your spouse seems fine and will enjoy it, but they don't understand that the aftereffects can last days - and you are the one who has to deal with it.

I really can't offer much practical advice, but you do have my sympathy and understanding.

Best wishes,