Just an update ... and to say thanks

[Linda M]

Hi Everyone,

I first posted on here late last year and everyone was so helpful with advice re my aunt who has early dementia. I just wanted to really update on what has happened since then, and as usual, ask for some comments.

Long story short ... she was in hospital for six weeks before Christmas after falling, she fell several times in the hospital and then she was sent home with a care package of carers going in 4 times a day. We lasted through Xmas (just) with a combination of visits, a brother taking her for a few days over Xmas (not too successful) and more visits. The carers were really good but she kept falling and then ended up in hospital for another six weeks after fracturing her shoulder and then falling again a few days afterwards.

Now she is temporarily in a small residential home which is further for everyone to travel (I live an hour away from her anyway and this place is a wee bit further) but it's really nice and she seems to be getting used to it. My mum and I went and got her sorted out with clothes as we couldn't find any in her house - she has gone from a size 18/20 to a size 10/12!

Saw her last weekend and had a lovely afternoon with her. I have learned from these boards to appreciate these times of being able to do something "normal" with her. We took her for a walk and a cuppa. It was great except for one thing ... during our conversation in the cafe it was apparent that she didn't really know who I was and she asked about me - if I had left school yet (I'm 35!). My aunt and I kind of laughed our way through it because I felt I had to tell her I was the person she was asking about but it was a bit heartbreaking. Since last year I see a huge decline both physically and mentally. However, I couldn't have got through it all without reading the messages of support and questions from everyone on this website.

Now to my question - she is wandering a lot at night at the home - going into other people's rooms and on some occasions, trying to get into bed with them. They have changed her drugs and take her for walks every day to try and settle her down. Will this phase pass? Is this sundowing, which I have seen mentioned here before?

She seems to like the small home but we as a family are concerned that this might not be a long term solution as the home implied heavily that they couldn't cope with her at night.

On a more long term issue, we have to broach the subject of her having the council house she lives in cleared. How do we do this as recently she thinks of home as the place she lived in over 20 years ago. I feel she is getting to a point of being unable to make decisions but I couldn't just go ahead and do things without speaking to her. (We are on the enduring POA route so that side of things is OK as we managed to get her to agree to that a few months ago).

Any comments appreciated.

All the best,

Linda

 

[connie]

Linda, Can't comment as I have no input at this time. Just want you to feel you are not alone. Please keep us posted. Love Connie

 

[Kriss]

Hi Linda

I could have written that posting myself! My Aunt is about an hour and a quarter away and we went through the rapid decline to needing residential care just over 12 months ago. We fretted at the time she was in hospital that a "nice" home may not want her due to the wanderings but were very lucky to find somewhere that is totally geared up and despite her having rung 999 in the middle of the night a couple of times to summon help, and sleeping more in the day than at night, they seem to be fine with her and have said it would be very unusual for them to have to want her moved as they feel they can cope with most aspects of her guaranteed decline.

She is always spreading her belongings around the building - they end up in all corners of the place - photo's (seperated from their frames), cd player, postcards etc - I think it's because she carries things around to show them off but abandons them when she forgets. The home is small enough to manage (around 30 residents) and the bits usually get gathered together and gravitate back to her own room or to the matrons office. It is also very secure without being obvious about it. If the home your Aunt is in cannot cope take heart that there may be another to suit. Start to research the options now in case you are pushed into a corner and pressurised.

On the house front we have almost finished packing Aunt's effects into boxes and stashing them in any corner we can find - I just could not bring myself to dispose of them as they are hers not mine so we will continue to look after them for her. Furniture has been more of a problem but what we couldn't home I have given (asked to take care of) to her friends to whom they will have some meaning. We are left with half a dozen items that will have to be put in a sale but we could do no more.

The hardest will be in a few weeks time when we will have to put the house up for sale. To many it will seem totally illogical to be struggling to keep what we have - my husband thinks I've lost the plot - but I'm just not hard enough to make that sort of decision just now. I'm probably prolonging the agony but it does give me some piece of mind.

I used to batter myself about doing things without telling her but now feel that it would be terribly unkind to even mention the house. There is no way she would a) be able to return home, or b) be able to ask to see home and that part is now my responsibility to deal with whether I want it or not.

I get to visit most weeks and I "think" she still knows me. I say "think" as we usually get a lovely smile but as she chatters away totally incoherently it may be that she thinks I'm someone else. I could be just the nice lady who always brings cream cakes!

Kriss