It is 15 months since my wife was diagnosed. I am really struggling with the slow but inexorable decline in her memory and cognitive responses, the repetitive questions and comments, the obsession with laundry, 10,000 steps a day, her son who lives in Edinburgh (we are in London). We cannot watch a tv programme without her googling every actor/celebrity to check on their age, marital status etc., she can no longer follow simple plot lines or remember the previous episode of dramas. Her short term memory is terrible but she is hanging on to past memories and repeating them constantly. Physically she is quite well, walking a lot, swimming 3 times a week and has pretty good social contact with friends and family but I am saddened and very frustrated with her mental decline and know and dread that it will worsen. Just wanted to vent and now I’m feeling guilty, disloyal. Not sure whether to post this or not, just expressing it in words helps, but here goes anyway!
Early but difficult days.
- Thread starter Keals
- Start date
Hello @Keals and welcome to Talking Point
We all understand the problems and it is OK to vent - it often helps to write it down and get it out of your system. The constant repetitions, questions and obsessions is like water torture - the constant drip drip drives you mad! It is not disloyal to talk about dementia. I know there is a stigma about it, but it should be spoken about and the carer needs support for this disease
xxx
We all understand the problems and it is OK to vent - it often helps to write it down and get it out of your system. The constant repetitions, questions and obsessions is like water torture - the constant drip drip drives you mad! It is not disloyal to talk about dementia. I know there is a stigma about it, but it should be spoken about and the carer needs support for this disease
xxx
Hi @Keals and welcome to the best place to vent as I (and I suspect many others) have done on more than one occasion. For us our journey has lasted 8 years up to now and a lot slower decline than that suffered by your wife but no less devastating and frustrating. We attend many Dementia charity cafes etc and talk openly about dementia with all and sundry and most certainly ignore the stigma that many demonstrate. Welcome aboard.
I try not to snap or remind her that she said that 5 minutes ago, I constantly try to count to ten, moderate my tone, make allowances but finding it very difficult at times. She has been offered a place at the Memory Clinic each Monday for 2 hours, starting tomorrow.
It took over a year to get any response from the NHS.
It took over a year to get any response from the NHS.
Im glad you have been offered some respite. All too often we are left to just get on with it. There is stuff out there, but you have to search, usually on-line, for it (and find time to look!). Have you got a dementia hub near you?
I found with mum that it was best to just listen with half my brain and make appropriate neutral noises as required...
I found with mum that it was best to just listen with half my brain and make appropriate neutral noises as required...
My mum who lives with me was diagnosed with dementia last year. I have contacted social services to get a carers assessment, so I can get help with my dealing with the change in her. She does not believe she has dementia. The change is so big, but mostly in her personality. She has become so selfish expecting me to do everything for her. She does not wash properly even though she is urine incontinent. Getting her to have a bath is a real problem. She lies and becomes annoyed when I point out she is not washing. I let this go as much as possible, but I don't want my home smelling of wee. I can leave her for a few hours if I go and visit my son, who is ill, but all other times she wants to come with me wherever I go. If I do leave her for a few hours I have a Echo Smart that has a camera so I can see her and chat, to see she is ok. She has not got aggressive in anyway yet, but I think she will in time. If she does come out with me she just wants to come home after a short time. She can no longer use a phone and struggles with the tv remote. I feel so very alone as i am the one who is with her 24/7.
I know how you feel as I get irritated and frustrated with her, but try not to let it show. Luckily enough I have a nice garden and can go out there for a break, if she doesn't join me. I know it is only going to get worse and I Miss my mum and my best friend very much. Good luck to everyone who cares for someone with dementia
I know how you feel as I get irritated and frustrated with her, but try not to let it show. Luckily enough I have a nice garden and can go out there for a break, if she doesn't join me. I know it is only going to get worse and I Miss my mum and my best friend very much. Good luck to everyone who cares for someone with dementia
Feeling for you ❤️. My garden is my sanctuary too, my wife is going out with a friend for the day and I am feeling quite guilty about looking forward to a day to myself, but it doesn’t happen very often. I’ll be in the garden most of the day, hope you can do the same and I’ll be thinking of you.
I so understand where you are. Don't feel guilty. I have a husband whose behaviour is very similar. His obsession is people stealing his stuff when I know he has put it somewhere. He tells me the time every 5 mins but it is his time as he can not read a clock any more we are back to the big hand is on the 2 and the little hand etc. some times I get so frustrated with him I tell him I have told him 50 thousand times when we are going out if I say we are going at 2pm then he will be dressed and ready at 6am and has to stand by the window asking when are we leaving. I have tried walking away ignoring him but he just keeps on going like a wind up toy, We have only been married 6 years and looking back his dementia started 2019 although he was only officially diagnosed with FTD this year so I feel very cheated and guilty because we never got the chance to do the things we planned and because we have not grown up and old together I find myself thinking I really can't stand this person and I do not want lumbered with him and his disease particularly after one of his awkward pantomime style days. We have no family so it is just the two of us so he can be very hard work. Some friends have asked how I put up with him I find myself answering it why not how and why because no one else will take him off my hands. The last 2 days have been very hard so today I do not feel guilty about any of my negative feelings. Tell them how you feel they won't remember tomorrow but you will feel better for having said it.
My wife is taking part in a clinical trial, for the past 9 months she has been having a four-weekly infusion, we don’t know if she is on the real drug or the placebo, this will continue for a further 9 months. It is having a positive affect on her mental attitude and I don’t consider she has seriously deteriorated in this time. For me the main benefit was getting a definitive diagnosis early on. She is having periodical MRI and PET scans, regular blood and cognitive tests. Sadly the response from NHS has been very poor, she has only just started a weekly session with a memory clinic and that only lasts for 7 weeks. There has been a lot in the media recently about new treatments, I would encourage anyone to approach these agencies, our experience has been that the psychological benefits are as valuable as the possible clinical ones and will hopefully speed up the discovery and development of new treatments.
Well done @Keals to you and your wife
. With a diagnosis of dementia I think I would try anything.
It`s a pity the NHS is unable to be supportive but they are in dire straits just now and I think the support you’ll be getting from those running the trial is as good as you’ll get.
Fingers crossed the reason your wife is feeling the benefit is she is not on the placebo.
. With a diagnosis of dementia I think I would try anything.
It`s a pity the NHS is unable to be supportive but they are in dire straits just now and I think the support you’ll be getting from those running the trial is as good as you’ll get.
Fingers crossed the reason your wife is feeling the benefit is she is not on the placebo.
