I feel a bit of a fraud posting this as my situation seems to be way better that for a lot of people in the posts I’ve read so far. My partner was diagnosed with Alzheimer’s about 18 months ago and is still in the relatively early stages. He was always my best friend and my ‘rock’, the person I could go to to solve pretty much any problem. He was a university lecturer, very clever and enjoyed social interaction and academic discussions. I find it so sad and distressing to watch him gradually losing his intellect and my reliable, rational friend becoming confused, irrational and unable to explain what is on his mind. He is subject to a lot of false memories which he believes totally. He also fabricates stories and events which I know never happened. There is no point my pointing this out to him because he is totally convinced. He is still ‘himself’ in lots of ways and doesn’t realise how he’s changing or even accept that Alzheimer’s has any effect on him (he thinks the pills have 'cured him and that his memory loss is just because he’s getting old). I’m not looking for solutions because I know there aren’t any, just some emotional support. I have tried joining ‘carer’s groups’ both online and in person but people don’t seem to want to talk about their feelings.
How to find emotional support - so sad to see partner losing his intellect and becoming confused
My lovely late husband suffered strokes vascular dementia and other health issues.
He used to confabulate, sometimes could be rather nice, ie he had been to Barcelona yesterday and going to Scotland tomorrow. Sometimes very sad,like he had been thrown in a cellar with rats. I do understand the loss you feel. You can or release emotions on this forum as much as you feel you want to. People do ’ listen’ and send hugs etc
((( Hugs from me)
Do you manage any time for yourself?
Me time is so important. I go for walks in a local park in order to relax and connect with nature
Thank you Pet66, I do get time to myself and go walking (we live in the countryside) or to pilates or something. My partner is fine on his own in the house for a couple of hours as long as I get his meals and he knows where I am.
Sorry for your loss, that must be so hard too xx
Yes, that’s what I do too thara_2207, nature is so calming. I’ve also now got a meditation app on my phone which is helpful.
Are you aware that your if your husband has an official diagnosis and claims Attendance Allowance he is now exempt from Council Tax? Do you have Power of Attorney sorted out? If not, make this a top priority asap.
You have my sympathy Marian. My husband has not been diagnosed but we are awaiting an appointment with the Memory Clinic and he did have brain atrophy back in 2013, then he had the acute on subdural brain heamatoma. I can relate to a lot of your post. No point challenging him.
My husband too was very clever - he has 45 patents. I have had to look outside the relationship to keep my sanity. I can only advise that you develop hobbies of your own and try to expand your social circle and find new friends and interests. For me, ending up Chairman of a Book Club had been a life saver, and over 7 years, I have made good friends. I am also an Admin of a local Social Group and we do Coffees and lunches. I had to ‘disengage’ from my husband for my own sanity, he is medically non compliant which frankly makes things a total nightmare at times. I am very very lucky with the friends I have made over the last few years though .
With regard to Carers Groups have you considered a Telephone Befriender? They are trained to talk about feelings, there may be a waiting list but well worth contacting your local Carers Group. Many have been Carers before so they totally understand.
Finally the Roll Call is a safe place to chat to other Carers so maybe you could join that?
I do have PoA but was unaware of the council tax thing - we don’t have attendance allowance at the moment as I doubt we’re eligible yet but I will keep thant in mind thanks.
Thanks Helena, I hpe you get an appointment at the memory clinic soon - it took ages for us and I made a number of phone calls pleading for it so the brought it forward! I do have a lot of hobbies and outside interests and that, as you say, is a great ‘escape’.
Marian, it’s a 3 stage process.
- Formal diagnosis
- Attendance Allowance
- Council tax exemption (on the grounds of “Severe mental impairment”, which is a horrible term)
It’s especially important to claim asap if your husband is below state retirement age, as he may then be entitled to Mobility as well as Care. Over pension age Mobility will not be paid.
Thanks but does he automatically get attendance allowance after diagnosis even though he doesn’t need any carers coming in yet? We live in Scotland so I’m wondering whether it’s the same up here as no-one has mentioned it to us and we do have a Post-diagnostic Support person coming in every six weeks or so.
My husband does not have Carers coming in but he gets Attendance Allowance and I get Carers Allowance. He is nearly 84 and I am 61. He has had it for around 9 years. We got it refused initially but Age Concern were brilliant and appealed for us. It is for things like transport to GP and Hospital appointments. I think my Carers Allowance is because husband is very deaf, and needs help with day to day tasks even putting his socks on and taking medication plus the whole running if the home is now down to me. If you have doubts, make a list of what you do for him every day, and phone Age Concern. They will advise you if it is worth pursuing but if he has dementia, then I personally would say that you should get the lower rate for him and Carers Allowance for yourself unless you are over retirement age when it stops.
I am past retirement age but I will find out about the attendance allowance. Thanks.
Definitely try to get out and about as much as possible. See if you can find some group activities at a local library in order to connect with some new people. Try finding part time work at a downtown museum or in a school additionally to learn skills. Good luck and make a set of brief summary notes on your options. Speak to a friendly career advisor about your chances of getting yourself into work and so on. Show them a copy of your resume. You can do this. Research totally is a key part of the whole process. Find some useful books.
Marian is retired, with lots of hobbies
Marian - if your husband is below 65, Personal Independence Payment applies. After 65, Attendance Allowance.
To qualify you need to be sufficiently affected to meet the criteria, on a points based system. It doesn’t necessarily mean that your husband has to need carers coming in. Not by a long way. For example, do you have to remind him what order to put his clothes on? My Dad was starting down the vascular dementia route shortly before he died, and once put his underpants on over his trousers. A good look for Superman, but…Mum had to talk him through putting it right, and calming down his upset. If he can’t do things without supervision, like use the kitchen (forgetting to turn off the gas, etc.), again, there are points for that.
To find out more, the CUK main website has lots of information and advice on the main benefits here: Benefits if you are disabled, ill or injured | Carers UK
My Mum had dementia, and the false memories was a big issue occasionally. Although one of the first was so much fun I wish it had happened. She was in hospital at the time, and told how some puppies had wandered onto the ward and used distraction techniques to steal all the meds from the cabinet!
I found out later that the ward had been visited by Pets as Therapy. I prefer Mum’s version, though. A touch of the Artful Dodger!
Funny thing: I worked in a carers centre for over 20 years and no one ever mentioned this issue - not even from the Alzheimer’s Society. Until I said something about it over Mum - then everyone came out and said “Oh, yes!” and started to tell their stories.
Thank you Charles, I’ll check out the allowance thing. At the moment my husband is ok dressing, I just have to make sure he puts clothes in the wash or he might never change them!
I will try and take a more relaxed view of the false memories - they are sometimes quite funny.
That’s all part of it, Marian.
Charles, I don’t know my way around the new forum yet. I’m sure somewhere on the main site there are details of what counts as caring, including “watching over”. Can you or CUK put a link in here please?
No need to feel a fraud, whatever the condition we are all carers here and have lost some part of a relationship because of it. Dealing with the day to day stuff is hard because its now centred on you as a carer and your needs are on hold. Sometimes I guess if its a physical condition then you still have the ability to communicate with each other, but Alzheimers makes it difficult, even in the early stages, I can only imagine how hard it must be for him to accept his mind is changing. You’ve lost a best friend, someone to confide in, someone who provided solutions, someone who was there for you. You are doing all the right things in getting time for yourself, going out, joining…but as you say its the emotional support, someone to listen without judging, someone who understands when your day has just been lousy( not sure if I can use other adjectives) sometimes our Halo’s slip and so they should, we are only human…