Hating myself

[Bettysue]

I know that we all hate what dementia does to our loved ones but I am beginning to hate what it's doing to me.
As I've said before my partner is quite far through the dementia journey. He is physically quite well but is now pretty well incontinent,cannot communicate as his words make no sense,sleeps a lot,and doesn't seem to understand what's being said to him. He would go and wander if I didn't keep the doors locked. He also has nights when he is up and wandering round the house for hours.
He is a shadow of himself ,as he was the life and soul of a gathering,liked to joke and had a great sense of humour.
I would freely admit that being a carer does not come easily to me. I find that I am becoming more impatient with him. It's often the small things that tip the balance. For example, he has to be properly ready for bed with incontinence pad etc but often refuses to get changed. Getting him ready can take a while. In the mornings he will refuse to wear what I've laid out,spends hours in wet pyjamas before he'll get dressed. Yesterday we had an episode with a soiled incontinence pad which he'd laid on the table! I had to make him have a shower to get cleaned up as he was smeared in excrement.
I find myself getting annoyed with him and at times being downright horrible . I seem to be always having to tell him what to do or not to do. Once I've had an outburst I vow not to repeat it but the 24/7 responsibility gets me down. I feel guilty as I feel I should be making his days more pleasant but there is so little he is able to do. Even TV programmes don't mean much to him now. He sleeps through a lot of it. We can't have visitors because of Covid or even go out for a coffee . I feel stuck in an endless loop .
I wish I could make life better for him.

 

[Pusskins]

I know that we all hate what dementia does to our loved ones but I am beginning to hate what it's doing to me.
As I've said before my partner is quite far through the dementia journey. He is physically quite well but is now pretty well incontinent,cannot communicate as his words make no sense,sleeps a lot,and doesn't seem to understand what's being said to him. He would go and wander if I didn't keep the doors locked. He also has nights when he is up and wandering round the house for hours.
He is a shadow of himself ,as he was the life and soul of a gathering,liked to joke and had a great sense of humour.
I would freely admit that being a carer does not come easily to me. I find that I am becoming more impatient with him. It's often the small things that tip the balance. For example, he has to be properly ready for bed with incontinence pad etc but often refuses to get changed. Getting him ready can take a while. In the mornings he will refuse to wear what I've laid out,spends hours in wet pyjamas before he'll get dressed. Yesterday we had an episode with a soiled incontinence pad which he'd laid on the table! I had to make him have a shower to get cleaned up as he was smeared in excrement.
I find myself getting annoyed with him and at times being downright horrible . I seem to be always having to tell him what to do or not to do. Once I've had an outburst I vow not to repeat it but the 24/7 responsibility gets me down. I feel guilty as I feel I should be making his days more pleasant but there is so little he is able to do. Even TV programmes don't mean much to him now. He sleeps through a lot of it. We can't have visitors because of Covid or even go out for a coffee . I feel stuck in an endless loop .
I wish I could make life better for him.

@Bettysue I know you can't help feeling bad about your impatience, but believe me, you are not alone as I was pretty much the same with MH. I knew that it was his dementia making him uncooperative etc, but it didn't make any difference to me. I just couldn't help feeling impatient with him. It is probably a million times worse for you also in that you are into another covid lockdown. I am in NZ where we are basically living normally. Having said all that, MH is now in care and I wish he was back here with me, but even saying that, I know I wouldn't be able to cope if he was. Can you get help from a carer once lockdown is over? Wishing you all the best, it's one hell of a journey for all concerned.
PS. MH was also the life and soul of the party with a great sense of humour. That was what went first and I miss that humour as much as I miss MH.

 

[jenniferjean]

I find that I am becoming more impatient with him. It's often the small things that tip the balance.

Same here. I sometimes manage to get him undressed and into bed, but when I go to finish cleaning up in the bathroom I find he's got up again and started to get dressed. He's not being defiant about going to bed, he just thinks it's time to get up.
This morning a neighbour called to see how we were and I came out and shut the door as it was freezing cold. He kept opening the door to see where I was and I kept telling him to close it as he was letting the cold in. At one point I really snapped at him (I'm putting it down to lack of sleep) and my neighbour said "Gosh you frighten me." And I thought yes I am turning into a nasty bad-tempered dragon.

 

[jennifer1967]

its more frustrating that have to repeat everything. my kitchen is always cold as we leave the window open for the cat . im forever telling him to shut the kitchen door. he doesnt listen when i answer a question and all i see of him is hes in his chair and asleep with snores as surround sound. marvellous.hes usual thing is he will listen to the first and the end part and make it up himself in the middle. when i want to read, thats when he gets chatty and i get short-tempered then.

 

[Angtrog]

@Bettysue I could of written this myself, I find my patience runs a bit thin most times these days. I know he cant help it but its so frustrating and I find myself being abrupt to him .Like yourself cant string a sentence together and it takes all your energy to work out what he is on about .He is dozing during the day then on a night awake half a dozen times in an hour trying to get out of bed to put clothes on to go out. He has walking difficulties so he wouldnt get far doors are always locked keys out and hidden in my special place incase I forget where I put them. I think it is tiredness that is causing me being abrupt to my OH . As they say it is hard being a carer especially with dementia in a lock down. I just feel trapped most days hopefully we can try and get back to a NORMAL life when this vacine gets rolled out

 

[None the Wiser]

Likewise @Bettysue. Its the nights that are so difficult for me. If I don’t get my sleep I’m not very nice! My husband isn’t able to do anything anymore for himself. He’s totally dependent. Our relationship is now completely one of Carer and cared for. He doesn’t know who I am. He is unable to watch TV, or do anything else, but does still enjoy listening to music. I have to remind myself that he is VERY ill in order to carry on. There is no doubt that he is VERY ill, but somehow that gets forgotten! If he had cancer I’d know it. What does that say about me, and society’s view of dementia. We are both in our late 60’s.

 

[Gorgeous Gail]

I feel the same @Bettysue. My Oh was only diagnosed in January 2020 but has rapidly declined in the last 6 months. His mobility is worst and he cannot walk without the aid of a frame and falls frequently. He has recently developed 'toilet' issues where he is back and to throughout the day and night (7 times some nights) and due to his mobility issues I have to go with him which means I'm awake throughout the night. As each night goes on I get more and more irritable with him.

I basically do everything for him, washing ( too dangerous to shower) dressing, wiping his bottom when he hasn't cleaned himself properly and ensuring that he is fed and watered and takes his tablets, as well as trying to keep on top of household chores and shopping and still working 12 hours a week.

He basically sits in his chair and 'watches' (not sure he does really) tv all day. He's recently started wanting to go to bed mid-afternoon and a late night for him now is 8 30 pm.

Today he's convinced that he isn't at home and keeps wanting to get a taxi to take him home. When I tell him he is home, he wants to go 'down there' meaning in the hall to the bedroom. I've told him he can't go there until night time but he just stamps his frame and throws a bit of a tantrum.

I hate myself but there are days when I wish he would die and put us both out of our misery. It is a horrible disease and unless anyone is going through the same as we are, nobody can totally understand how we are feeling. I'm totally at my wits end and am not sure how much longer I can continue to look after him safely.

 

[Old Flopsy]

I sympathise with you all because it is how I feel too.

My OH sits on the settee all day with his eyes shut- no interest in TV, newspaper, computer, etc any more. It is soul destroying.

One Christmas present he was given is a torch - which he shines in my face periodically- I find it so irritating! I might have to 'lose' it soon lol.

 

[MaNaAk]

I was the same with dad although we didn't have a lockdown but he was deaf so I had to use the top of my voice. Believe me you are an angel.

MaNaAk

 

[jennifer1967]

my husband has a thing for watching police interceptors and heavy lorry rescue programs ive seen loads of times but he doesnt get bored of them. even when im reading, he tries to involve me with comments like look at that, did you see that. no i didnt as i had escaped into my book and dont want to come back just yet. or he will say whos the actor in a cowboy film[another of his passions] i wasnt born then so no idea and not interested either. not accepted, i have to look it up to satisfy him

 

[wendy e]

I know that we all hate what dementia does to our loved ones but I am beginning to hate what it's doing to me.
As I've said before my partner is quite far through the dementia journey. He is physically quite well but is now pretty well incontinent,cannot communicate as his words make no sense,sleeps a lot,and doesn't seem to understand what's being said to him. He would go and wander if I didn't keep the doors locked. He also has nights when he is up and wandering round the house for hours.
He is a shadow of himself ,as he was the life and soul of a gathering,liked to joke and had a great sense of humour.
I would freely admit that being a carer does not come easily to me. I find that I am becoming more impatient with him. It's often the small things that tip the balance. For example, he has to be properly ready for bed with incontinence pad etc but often refuses to get changed. Getting him ready can take a while. In the mornings he will refuse to wear what I've laid out,spends hours in wet pyjamas before he'll get dressed. Yesterday we had an episode with a soiled incontinence pad which he'd laid on the table! I had to make him have a shower to get cleaned up as he was smeared in excrement.
I find myself getting annoyed with him and at times being downright horrible . I seem to be always having to tell him what to do or not to do. Once I've had an outburst I vow not to repeat it but the 24/7 responsibility gets me down. I feel guilty as I feel I should be making his days more pleasant but there is so little he is able to do. Even TV programmes don't mean much to him now. He sleeps through a lot of it. We can't have visitors because of Covid or even go out for a coffee . I feel stuck in an endless loop .
I wish I could make life better for him.

I was feeling I should post on here because of how I was feeling and when I opened and saw this post it was exactly the same. My OH went into respite in November to give me a break from 24hr care. When he came home I felt stronger and decided I could manage and would find things to keep him amused as he never sits down during the day. The care home asked when he usually naps and I laughed out loud. However after 6weeeks I am feeling as bad again. We live in a secluded place so the carer left after 2 hour stint today and I won't see a soul until she comes Tuesday for my other 2 hours. He doesn't know who I am and can do almost nothing for himself. Even when I put food in front of him he doesn't know to eat it unless I tell him. Tried to drink coffee with a knife and wanted to eat the dogs dried food. I have come used to the emotional changes, l don't feel anything now ,but no-one tells you how to do the practical things. He now needs help toileting but I don't know how to help. To be honest I don't really want to. This might be what makes me decide he has to go into full time care. I feel like giving up and although I know some people are dealing with worse it doesn't help.

 

[jenniferjean]

I have come used to the emotional changes, l don't feel anything now ,but no-one tells you how to do the practical things. He now needs help toileting but I don't know how to help. To be honest I don't really want to. This might be what makes me decide he has to go into full time care. I feel like giving up and although I know some people are dealing with worse it doesn't help.

I told myself some time ago that once my husband became incontinent he would have to go into full time care. But it happened over a period of time and I found I was dealing with it before I realised.
When the dementia was causing him to act like an overgrown toddler, then that was how I saw him. So when it came to cleaning his bottom and putting incontinence pull-ups on him, I was just coping with a toddler. I still love him, but not as my husband. I struggle to remember him as a loving husband, mainly because I push those thoughts away. Some days do seem worse than others. I am desperate to get him into respite. When I considered it was just before we went into the first lockdown. So I've never been able to get any respite so far. I do worry that when I do I won't want him back.

 

[Thethirdmrsc]

Hi @Bettysue just give in to the frustration. It’s damn hard being us, so give yourself a break! My OH and I have never had a cross work in the 24yrs of being together, until the last 4 of Alzheimer’s, when I have never sworn so much in my life. He is like a toddler and i Just don’t have the patience now.

 

[Pots and Pans]

Can identify with feeling guilt over being impatient or snappy... Been with OH over 45 years and heartbreaking to see the change this year. Made worse by hip fracture in March and hospital stay led to post op delirium. Still not very mobile... not compared to how was before. But worse is how we are now just constantly upsetting each other. He is depressed or angry, often pushes away help. I end up in tears or angry too...then so guilty as I am not the sick person so should be better. Think all the lockdowns make it do much worse as we are just cooped up.

 

[Bunpoots]

Welcome to Dementia Talking Point @Sue Stormy

Something I was told is that dementia is a very unusual illness as it affects the carers more than the sufferers (my dad believed there was nothing wrong with him and he looked after himself perfectly well ?) so no-one should feel guilty about their feelings. It’s actions that count.

 

[Pots and Pans]

Yes. ' I'm ok and don't need any help' is common from OH, as is belief he had just fine/ can do things he used to do but seriously can't right now... like walk five miles over hills or drive me to supermarket. If I say.not today or I am fine to do alone ( only recently got to point where I can leave him unattended) he gets annoyed and he just doesn't understand. Mobility is massive for him as was always so active. Now has shuffly walk and the hip injury has meant having to basically learn how to walk again.. at same time as AD makes learning so difficult. Just feel I am not doing very well. Tired. Btw no carers, no family and no visitors due to Covid.

 

[jennifer1967]

thats a hard place to be. where my husband is shielding, we dont get anyone either and my son has just been tested positive for covid so the help we were getting is gone and have more worry. we dont have carers either. we are not that far along and i do anything that needs doing. i think its the sheer loneliness of it all. im a bit trapped at home as well as im in pain and not very mobile. i do everything and sometimes i think that he can help someways. he gets confused when i tell him that hes made me angry and cant emphasize when im upset

 

[Ramblingrose]

I defy anyone who cares for a person with dementia NOT to lose their patience. I'm only a part-time carer thank goodness. I can identify with all the comments. One day when dealing with my mother a lady came up to us and told me off. To which I replied when you have to look after someone with dementia you may understand. For example she had no idea the effort and struggle just getting her ready to go out.

 

[Pots and Pans]

Thank you. Sounds similar to our situation in that I do everything. But sorry to hear you are in pain physically and not very mobile. Fingers crossed so far I am ok except for a bit of back trouble as s result of humping chairs/ commodes etc around when OH first home after his fall . As it was in lockdown I had to reorganize furniture to fit in downstairs bed.. even brought a settee downstairs on my own so not surprising back hurt. But I fear how much worse it will get. If I can't cope well now, how will I manage if he gets as bad as I read about in other posts. We are still only middle stage at worst. Just occasionally doesn't know who I am for instance whereas the post op delirium led to total confusion for several weeks.

 

[Pots and Pans]

I defy anyone who cares for a person with dementia NOT to lose their patience. I'm only a part-time carer thank goodness. I can identify with all the comments. One day when dealing with my mother a lady came up to us and told me off. To which I replied when you have to look after someone with dementia you may understand. For example she had no idea the effort and struggle just getting her ready to go out.

Agree. Takes us about 2 hours to get up and dressed. By the time we have done daily walk it is nearly lunchtime...