Dementia husband

I just wanted to add to the others' comments that you absolutely should not put the additional burden on yourself of feeling guilty for feeling irritated and upset. It is "normal" and absolutely ok to feel that way. I don't have a lot of "professional" advice to give, but only wanted to say, I feel for you and wish you strength. There is no more difficult task or burden than the one you are having to undertake at this time. I know there are support groups out there, and even though, you may have little time to participate, try to even if it is just for 1/2 an hour. Though it may seem a little callous to say this and I do not mean it too, at your darkest moments try to remember that this time period will end and your loved one will move on peacefully, and you will miss their presence but know you did everything you could and finally be able to have peace. I wish you all good things and am sorry you have to experience this now.

Quite apart from the physical and emotional strain of caring for someone with any form of dementia the loss of the person you love is hard to bear. It is lonely and sad and hard to be the person you feel you ought to be, and when life with DH got too frustrating I used to go into the garden and scream (I did warn the neighbours!). At least then I could go back indoors and pick up the reins again and not shout at poor unwitting DH who would have hated the thought of being such a problem.

Accept all and any help - I was too wary but we did get to the stage when a weekly trip to the supermarket was my only free time, not good for either of us.

This awful disease is so exhausting, I sometimes feel I am starting with dementia myself-My mum must feel a thousand times worse as she’s the main carer at nearly 80
I find myself wondering & praying if the end is near. Sounds selfish but it would mean my mum could live what’s left of her life.
I get really mad that because my mum & dad have worked hard, paid taxes, they are penalised, mum was told she would have to pay £1485 a week for care- never worked & it’s all paid for. I think that’s why I come on here for a rant, because I am so angry

HUSBAND HAS DEMENTIA. I DONT' UNDERSTAND I HAVE AMD.MOST OF WHAT HE SAYS. HE SAYS IT IS PART OF HIS JOB. I HOPE IT IS NOT CATCHING. I HAVE AMD ANd fall many times. my balance has totally gone.

Lots of excellent advice here. The Alzheimer’s society is a very good source of help and understanding; it does not only help people with Alzheimer’s but any sort of dementia. If your husband is not getting Attendance Allowance do apply for it. I used my husband’s to pay for someone to sit with him a couple of hours a week while I did my old volunteering for a short time and caught up with friends and felt myself for a little while. The last few months he slept a lot. She loved ironing ( which I hate) so she did ours which was a bonus!
There will be days you just can’t manage to do your best. Try not to dwell on it. You are only human. It is an exhausting and deeply sad time : it’s not surprising if you just can’t cope for a few minutes.

Oh Juniper I feel for you. My DH has had a diagnosis of mild dementia for the past year. I know what you mean about advice and leaflets. The people who give the advice and write the leaflets prob haven’t walked many miles in our shoes.
DH still enjoys talking to family and his mates. He reads the paper sort of and we discuss the news.
But he can’t make a cup of tea, sort out his meds, run the washing machine, remember between kitchen and garden whether a rubbish bag goes in the blue or green bin.
None of the children live locally.
I know it will get worse. But how dare these websites talk about journeys? Who wants to be on a journey if you dread the other end. My DH and I are at the top of a crumbling cliff. I’m clinging onto something and he’s clinging onto me. Eventually the cliff will crumble some more and he will slide away and I don’t know how I’ll bear it. So I cling on with all my might.

Thank you silverlining48. I do try and live day by day. As each day is different and I have no idea what the immediate future will bring. My daughter is coming tomorrow for a couple of days and that cheers me up a lot. She knows exactly whst life is like here and that helps.

Virtual hugs and sympathy. I know how you feel.

Please stop feeling guilty! It is not your fault.
My friend eventually found a nursing home nearby for her DH with Alzheimers, where she could visit daily but could actually go home and get a night's sleep.
Before that he would regularly wander off down the road in the middle of the night.

He lived about 2 years in the nursing home. He had visitors and seemed to quite enjoy the place. He had been a musician and never lost his ability to play the accordion.

My friend would occasionally tell me about the good times when D was alive.
She joined a dementia club too where she met others suffering.

You’re right Helter, if you don’t look after yourself then you can’t help your husband.
I am sorry you are having a bad day. Hope tomorrow is better.

This has been a helpful thread for me today as I am having a bad day with DH.
I think of several friends whose husbands have died suddenly. And that is awful as things have been left unsaid and the shock must be overwhelming. This situation I am in is that it has been difficult for many years and I feel my life is running away now like sand in an egg timer. I have had to face my own cancer treatment and current problems with my eyes on my own with no support from DH at all. So on bad days I have a cup of tea, like I am now, and tell myself that if he were well in mind and body he would be supporting me. But he is not well. And I must look after
myself first and foremost and he must sort of take a back seat. Every decision now I will think how does this affect me first of all. I haven't been doing that which doesn't help either of us.
I don't mean I am not continuing to care for him as I have done for so many years, but I must come first now.

BlueBelle

No there is no light with this illness let’s not beat about the bush ….get as much support as you can, share the load as much as you are able, and tell yourself everytime you get annoyed
a) it could be you how would you like treating
b) most most important how will I feel about this when he’s gone
It’s 12 years now since my mum died with dementia and I still beat myself up why didn’t I do this! why didn’t I say that, why did I get irritable. I was tired, exhausted, sad sometimes cross why didn’t I hide it ( I think I did mostly but I only remember the few times I didn’t ) others would probably say I did a good job but my brain grabs the few times it went wrong

Do your best and put yourself in his position and grab every bit of help you can. I feel for you but I feel for him too he didn’t want this it’s a cruel cruel disease to everyone involved

Bluebelle, your message resonated with me so much. My mum, bless her heart, drove me to distraction, and I wish I could go back and change the way things happened. I wouldn't change everything, but there are definitely days I'd love to get a second go at.
Juniper1 unfortunately it won't get get better. It will go downhill, and although I realise it's different with a partner than a parent, putting mum into a local care home changed everything for both of us. I could be a daughter again, and Mum made friends again, including me. We enjoyed our time together like we used to.
You have to be kind to yourself. When mum lived with us, she went to a day centre twice a week, and I could just sit and read or have a bath, etc, without worry.
One thing I would mention is that urine infections made mum way worse than usual. I could spot the signs, and so could the ladies at the home. Once the antibiotics kicked in, she would definitely go up a few notches.
I am so sorry your life has been uprooted in this way. Find like-minded people who will empathise as well as sympathise and more importantly, understand. I didn't have that and with hindsight I think it would have made a huge positive difference.

It is indeed a hard road. The Bodach died of cancer about a year after his diagnosis, and I honestly don’t know how I could have coped for a long period of time.
What I’d say is definitely don’t feel any guilt for how you feel, or if you just have to get a break. Take all the help you can get, and just try to adapt to the way things are , hard though that may be.
I found it much easier to ‘go into his world’, rather than arguing or contradicting. When he was getting dressed in the middle of the night to go somewhere, he’d usually accept if I told him we’d go in the morning.
My friend is involved in this excellent organisation, and I found that the playlist of meaningful music had a very calming effect on the Bodach.

playlistforlife.org.uk

My thoughts are with you.

Dementia is the most awful disease. My husband was diagnosed 2 years ago (had symptoms for years before)and sent off with no support. I am just beating myself up at the moment as I am arranging a week's respite next month for the first time. It is important to try to get some 'me' time before resentment sets in.

I am so very sorry, this is a terrible disease as you lose your loved ones a long time before they actually die. I have a few friends who have husbands with dementia and they are really struggling, some at home and some in nursing homes.

I lost my husband after eight years of being very ill but at least we could have conversations and laughs together and talk about the old times.

I am so terribly sorry.

* blossom* if you haven't already done so, please contact, AgeUk, Alzheimer's Society or Admiral Nurses. There is help out there. It's a hard road.

Juniper1 commiserations from me. I am in my 6th year of dealing with this gradual deteriorating dementia situation with my DH and a bit like Helterskelter1 In the wee small hours I try to see that others have a much worse life than I do.

My main aim is to escape for an hour or two where I am not seen as a carer, and that is not always easy to do as I have had to give up my car due to horrendous Insurance at 83.

I am fortunate that I can walk to the Village Hall for WI and an exercise class for older bods. Also I go to the village book club. At the moment I can leave DH safely for a couple of hours. My Indulgence is a lady gardener once a fornight.

My youngest DD and DGS help with Dental and GP appointments. All other home appointments - hair, feet and eye tests have had to be sourced by me

Try to find an 'escape time' just for you, you are still a person in your own right.

I am well aware that all I tried to put in place can collapse as I can see that my DH is deteriorating pretty rapidly now.

Look after yourself you are important.

kittylester

Juniper1

I am aware of organisations thank you. Was looking for personal responses, experiences, commiserations etc

The Talking Point forum is for people in just your position to talk to other people in a similar position.

Talking Point was a lifeline for me, for too many years when I had first FiL and then my mother with dementia. Whatever you’re going through, others will have been there and know exactly what it’s like.
Unless they’ve lived with it, other people so rarely do, but all too often think they do and like to offer you advice! 🤬

There is a very good reason why my GN user name is Witzend!

No there is no light with this illness let’s not beat about the bush ….get as much support as you can, share the load as much as you are able, and tell yourself everytime you get annoyed
a) it could be you how would you like treating
b) most most important how will I feel about this when he’s gone
It’s 12 years now since my mum died with dementia and I still beat myself up why didn’t I do this! why didn’t I say that, why did I get irritable. I was tired, exhausted, sad sometimes cross why didn’t I hide it ( I think I did mostly but I only remember the few times I didn’t ) others would probably say I did a good job but my brain grabs the few times it went wrong

Do your best and put yourself in his position and grab every bit of help you can. I feel for you but I feel for him too he didn’t want this it’s a cruel cruel disease to everyone involved

Juniper1

I am aware of organisations thank you. Was looking for personal responses, experiences, commiserations etc

The Talking Point forum is for people in just your position to talk to other people in a similar position.

I fear my husband (78) has dementia but after a TIA and head scan, am waiting for a diagnosis. I get totally frustrated because of his behaviour, keeps calling me at night by his sister’s name and when I get up - can’t remember what he wants. He usually wakes me up for a hot drink or more biscuits. I attend a monthly Carers Group, organised by our doctors, which offers support. He has been told not to drive, pending diagnosis and most importantly, give up smoking which is exacerbating his condition. Luckily for me I have support from my children.

Much sympathy. I am coping, or trying to cope with a different problem which is frustrating and exhausting me. And saddening to see the man I knew disappearing and the life I thought we would be leading, and others lead, will never happen. Winter approaching fills me with dread.
The only things that "help" me at this moment awake at 2.30 is that life could be 100 times worse as it is for millions in the world and that it could be me who is not well and I must try and act like I would hope he would act for me.
Not much help I know. But as said above look after yourself. And ring as many organisations as you can for advice and help.

Sorry for your predicament OP. It's dreadful being on the dementia "journey" especially with a man. Keep strong and set aside some time to yourself everyday. We are not superhuman and you are bound to have very rough days.

I am experiencing the end of a nightmare day with a problem not diagnosed because of denial I feel your pain.💐

I am aware of organisations thank you. Was looking for personal responses, experiences, commiserations etc