New to dementia journey

Tell us a bit about yourself here.
589 posts
Pet, yes, it's shocking, and distressing and downright 'scary' when you suddenly see in-your-face evidence of 'yet another' stage of the remorseless decline....

I got that when I was told on my last visit to MIL that she's become immobile (in the space of the couple of weeks between my visits), and now my friend with her dad living her told me that she now has to feed him....he won't eat by himself, she now has to do it for him (ie, put the food up to his mouth). (I saw a carer do that in my MIL's home, and it's painful to see - the lady sat there like little bird, opening and closing her mouth, as the carer spooned forkfuls of cake into her mouth. It just seems so screamingly WRONG!) (Because, of course, it IS wrong when an adult loses the ability to eat their own food.)

Oh, sad, sad, sad....
Arrived home from my visit to hubby which was ok, to an email from the court of Protection. They want last years bank statements. I suppose I expected it but I thought oh damn and blast, or even worse! I've managed to attach the statements at a second attempt. Put me in a rotten frame of mind for a while. As if I'm not going through enough,along with thousands of others in the same boat.
Moan over.
Pet, it might be worth getting a scanner/printer. Can get them quite cheaply. Then scan all documents such as receipts, especially those on small bits of paper or where ink fades over time, as you get them. Then you have them in the computer ready for when COP needs them. Same for any incoming statements etc.

If you get in the habit of doing it at least weekly it doesn't become too time consuming.
If you get documents in that are several pages then a scanner with a feeder is useful, else it's one page at a time

Pet I know what you mean about our husbands eating habits. Brian ends up with more food over his face and down his front than in his mouth! He will insist on loading up his spoon or fork then losing half of it before it gets near his mouth. When I try to take the spoon to help him, he hangs on to it for grim death and won't let me have it. He eats his meals in his room as he is usually back on top of his bed before lunchtime and I just cut up his food and leave him to it. I am sorry to say this if it offends anyone but he puts me off my own food if I have to eat with him.

He is still confined to bed with the abscess, this is his fourth week. The district nurse has been going on and on for the past few days that he must be got up and into his reclining chair in the living room. My argument is that how the hell do I get him back through to his room after an hour or so when he is tired. It took two of them to help him to walk.

They have now come up with a plan for tomorrow. Carers will come in and wash and dress him, help him through to his chair and two hours later, two other carers will come back and help him back to bed. I will believe this when I see it. We will end up waiting and waiting for someone to come to help him.
No advice Irene - just sending you hugs. My husband sits a lot and GP did comment on this but he has oesteoarthritus and I am very slight so no way could I help him and it is a huge worry with regard to him falling as he is not steady on his feet. So maybe I should not get his Fortisips for him and encourage him to walk more but it is such a hard place to be in knowing what to do for the best so you have all my sympathy. Yes sitting in one place for long periods can help bed sores develop, but when it comes to keeping them safe what choice do we have?

I sometimes do not htink these professionals live in the 'real' world where we carers know we are doing the best we can.I do hope your carers turn up and I can imagine the frustration you must be feeling right now.
Mrs A, I have a printer,and I'm sure it scans. It was ok getting the years statements on line,and I was able to attach to email. Had to think about what to do but the 2nd attempt worked. That's me, panic, then find the determination to succeed!
Irene, I do hope it works out, the carers coming in and sticking to the times. It's getting harder for you by the sounds of it, please take care of yourself. No it's not offensive, you saying it puts you off eating with Brian. It's not pleasant, watching them struggle etc. Hubby was strict on table manners, and if he could see himself, he was would be mortified.
Don't know if anyone is in Devon.....

Exeter University is doing a research project into Dementia and especially any connection with epilepsy. We were invited to take part, and agreed for a couple of reasons.
1) They come to the house, and do tests with the person with dementia, and also ask the carer to fill out a couple of forms. They also chat with you. They were here for about 1 hour.
2) They will return in 12 months, and repeat same tests, to evaluate how much the dementia has progressed and any other health problems.

I think this is an excellent idea because the Memory Clinic in Exeter just diagnose, and then you are pretty much left to get on with it. By taking part in this research it is helping them, but it is also monitoring the progress of these awful diseases.

So, point is, if you live in Devon why not take part in this research yourself? PM me for contact number.
It's an illness that effects not just that person that it is happening to but effects the person or people who they leave behind, physically or emotionally. Can't imagine your pain and torment you go through day to day but can appreciate what a strong loving person you are to let others read a small preview into your life. Your husband wouldn't want you hurting but remembering what you both shared. from your replying I can tell you have a great sense of humour you have and don't ever apologise for it.
What are the memories of your hubby that bring the biggest smiles to your face?
I can't take away your frustration, confusion or pain but hope to bring a smile and to let you know you're not alone.
Sadly Lorraine, in my case at the moment, .I find it difficult to find the good memories. I'm clouded by ambiguous grief, and what's happened in the last 3 years, at least.However,when I stated, a while back that memories are not coming forward, our lovely wise BB explained that it can happen, not to worry or struggle to find them, because eventually they will surface. So I'm plodding on and try to treasure any snippets of joy I get when visiting.
Had a lovely afternoon with my friend, who can now visit me after her hip replacement. Lunch etc.
Then I had a phone call from the CHC funding office. The person that spoke didn't even know hubby is in a nursing home!! She phoned the home, after I explained, and has arranged a meeting for the 15th of August, without telling me. How rude is that. I only found out because I phoned the home to say. The nurse I spoke to is appalled they didn't know that hubby is in a home, and that I wasn't consulted about the date. This is made me very anxious.
589 posts