Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
It sounds like she is forgetting what she has to do. Have you tried very small step by step instructions or even helping her?She will wake up several times during the night ...... ask to go to the toilet. Having gotten up to put the light on and show her where the bathroom is she then refuses to go, only to want to go again 20 minutes later
I am not sure even respite is the answer to this situation. I know she is relatively young but so are a lot of residents in care now. Yes, speak to the GP and try again with social services. Although self-funding, when I reached breakdown a social worker helped me so much and found my husband his nursing home place. It was obvious I was in no condition to do it or to carry on.Hi, I haven't posted for a while but recently my relationship with my wife (who is 60 and diagnosed with Alzheimers 5 years ago) has seriously deteriorated. When we started on this journey I naively thought I would be able to cope, we had a very happy loving marriage.
I have reached the point now however where on some days I can hardly bear to be in the same room as her she annoys me so much. Its's not one specific thing but the culmination of so many. Although physically fit she is now incapable of writing, reading, speaking coherently or of understanding much of what is said. She spends most of the day wandering through the house constantly humming the same inane little tune to herself.
She is obsessed with finding her parents who died years ago, whenever we go out she generally takes a lot of persuading to go and always becomes angry when we reach the destination because she thinks we were going to see her parents. Recently she has refused to go into the shops when we get there or get back into the car to come home. She also refuses to go to the toilet even though it is obvious she wants to go, she can go hours between visits until it becomes desperate and increasingly she is wetting herself. Because of these issues I have almost stopped taking her out other than for medical appointments. In the last few months she has refused to allow the dentist and a chiropodist examine her and at her annual check up at he doctors she wouldn't allow the nurse to touch her, taking bloods is out of the question, all we could do was to get her to stand on the scales albeit with her shoes and coat on.
She will wake up several times during the night and either sit up humming that stupid tune, ask over and over again for her parents or ask to go to the toilet. Having gotten up to put the light on and show her where the bathroom is she then refuses to go, only to want to go again 20 minutes later and so on. So most days start with me being very tired and not in the best of moods. When she then refuses to get in the shower, throws dirty underwear in my face, starts shouting obscenities at me, flicking soap and water at me, refusing to dry herself, snatch the clean clothes out of my hands I now tend to lose my cool and have sworn more at her in the last 18 months than I have in the previous 62 years of my life put together. Even when I leave the room to get away from her she tends to appear ghost like in the room I have gone to a couple of minutes later and starts humming again.
I know I shouldn't but I now get so angry I argue back, I tell her in no uncertain terms to shut up when she starts humming, and to my shame I have come right out and told her that her parents are dead and generally have to storm out for fear of doing something I'd regret.
I feel so tired and weak after one of these episodes that I then just can be bothered to make any effort to interact with her at all. I'll make meals and hot drinks, ensure she has her medication, prompt her to go to the toilet, I have given up any attempts at distracting her or making small talk and we can often spend most of the day hardly speaking.
I end up feeling thoroughly ashamed of myself but know that tomorrow will bring more of the same and I will probably react in he same way.
Worst of all I am becoming isolated from friends and family because she becomes angry and aggressive if I speak to people. I therefore can't invite people to our home because she becomes so disruptive and will swear at people. If I want to see anyone it has to be on one of the two afternoons I have off when a carer comes in, as you can imagine this is very restrictive. I even have to make phone calls upstairs because she becomes angry when I am on the phone. In particular it is becoming increasingly difficult for me to have much of relationship with my two grown up daughters. They are very understanding and happy to visit and be sworn at but I would be on edge the whole of the time and would ultimately end up getting very angry that it isn't worth it.
We do have some good friends who have stuck by us, my wife in particular has a friend who visits from quite a distance for an afternoon most weeks which means I can get out for a third afternoon. They always have a good time but my wife will get very hostile towards her friend on my return.
I'm not sure where I go from here, because she is relatively young any suitable day care facilities are few and far between if there are any at all who would have her, that's always supposing she cold be persuaded to go. At her annual check up the nurse suggested I speak to a GP to review what to do next. I'll leave that until after Christmas now but I am not too hopeful of anything coming from it.
Sorry this has gone on a bit, thank you for taking the time to read, any thoughts would be welcome.
The problem is once she decides not to do something then there is no changing her mind. I can take her to the bathroom show her the toilet then she will just refuse. Sometimes she will even take her .......wouldn't you know, just as I was typing that she says she wants to go to the toilet, so I've just taken her along, put the light on opened the door pointed out the toilet, she goes in takes her pants down and pulls them back up again without going. She then adamantly refuses to try again. If I tried to help further she would just push me away. No doubt she'll ask to go again in 10 minutes or so.It sounds like she is forgetting what she has to do. Have you tried very small step by step instructions or even helping her?
Thanks for your reply, and you Duggies girl, I know what you say is right, I am 63 and luckily have no health problems and there are so many things I still want to do and places I would like to go. but I keep thinking what would I want if the roles were reversed, I'm sure I would be happier in my own home. I realise though that i cannot go on like this and I will take your advice and contact the GP and Social Service, and the local Carers group. Thank you for your good wishes, Happy Christmas to you all.I am not sure even respite is the answer to this situation. I know she is relatively young but so are a lot of residents in care now. Yes, speak to the GP and try again with social services. Although self-funding, when I reached breakdown a social worker helped me so much and found my husband his nursing home place. It was obvious I was in no condition to do it or to carry on.
This situation is torment for you. It does not have to go on. I thought I could see things through with my husband but it broke me and he is very happy in his nursing home (see my thread don't throw me away .. breaking my promise). All the torments you describe and many more I went through because I could see no option. Please don't go on suffering like this. warmest, Kindred.
We all think that, but there comes a point when it is no longer true. This time last year I was making the decision to move my mother to a care home. I knew it was the best thing for her but it took me a couple of months to get my head round it and make the arrangements, it seemed such a drastic thing to move her out of a home she'd been in for over 40 years. But actually she loves the care home and is really happy - far happier than she was in her own home a year ago, because she is surrounded by staff who can help and reassure her 24/7, and it has genuinely become her home.I keep thinking what would I want if the roles were reversed, I'm sure I would be happier in my own home.
My advice would be not to make a big fuss about the toilet. I take my wife about twenty times a day, most unsuccessful. Does it really matter if she uses the toilet or not - things will change over time.I can take her to the bathroom show her the toilet then she will just refuse
It took me a while to understand what our support worker meant when he said her age (67 years) was against her. I now understand that the younger the person, the more likely the illness will accelerate.my wife has just turned 60.
Hi Nita, thanks for that. I was aware of these organisations, I've attended a couple of things at Carers Northumberland including a one day session on caring for someone with dementia. They have monthly advice drop ins but the timing is wrong for me, but they do have a helpline I can call. Likewise the young dementia centredctale somesgetting too. I'm going to have to make some calls. Thanks for your responseI don't know if a "sitting" service by a care agency would be appropriate for your wife? There was a service which I was referred to by the GP giving you 30 hours' respite a year in the form of someone coming and sitting with my mother for a few hours so I could get out. It was a free service, not means tested and I used it occasionally.
I see you live in Northumberland and I wondered if these links might help you, if you haven't seen them already:-
I also found this site for young onset dementia care in the north-east:-
Hi, The finances are another issue completely, I suppose I need to see what options are available and what they would cost. But initially it's deciding what would be in the best interests of both myself and my wife and then see what can be afforded. To be honest as my wife is only 60 predicting how long I would need to budget for is like predicting the length of a piece of string.I understand your reluctance about full time care. I have started to think about that but the cost for somebody with young onset who is physically fit is quite terrifying- even if you find somewhere that will take them. It would take everything we have and leave me with nothing for my own old age.
When looking at care costs it is only the PWDs assets that count, you shouldnt have to pay anything at all. Im hoping to start day care for my OH after Christmas - he wouldnt go earlier this year, but he had assessments and everything, so I know how it works. If he had savings (thats savings in accounts with only his name, or half of joint accounts) that amount to more than £25,000 then you would be self-funding. If/when the savings dip under this amount then the Local Authority will start contributing and you will only pay a portion. The house is disregarded while you are living in it.I understand your reluctance about full time care. I have started to think about that but the cost for somebody with young onset who is physically fit is quite terrifying- even if you find somewhere that will take them. It would take everything we have and leave me with nothing for my own old age.
No. His half will be defined when you have the assessment and then any payments will only come from his half and will not reduce your half.Thank you. What I am worried about is that our savings are 50/50 and if he always has ‘half’ then eventually my half will be eroded. That may not make sense! I am not good at explaining......But I will go and get advice soon since he is about to inherit something from his mum and presumably that won’t be shared . I do have lpoa
Hi canary, yes I agree that that organising separate bank accounts is the thing to do. I have POA and we now have 3 account, a joint account for all joint living expenses and separate individual accounts hich our income goes into. I then have standing orders in equal amounts from each of the individual accounts into the joint account. Hopefully should the need arise this demonstrates that I am acting fairly as POA.If you are worried about it you can organise separate bank accounts. It is something that is often recommended anyway.