Awareness,  Dementia,  Family,  Personal

Change isn’t always bad.

Losing my Uncle in April set Nan and I on a path that I knew was coming but was putting off. Nan now has carers coming into her house and I have a lot less responsibility, more time for me but I’ve also had to adjust to my days being completely different now.

When my Uncle was with us between him, me and my mum we did all of Nans caring. I did all of the personal care and things were starting to get harder but we were coping. I described it to someone as actually treading water. Prior to my Uncle getting ill I was seeing Nan once or twice a day. When my Uncle was taken to hospital I stayed with Nan the first two nights to make sure she was ok and on the third night she sent me home and told me she couldn’t understand why I was there. Ok, thank you Nan! I did appreciate my own bed! I started to see Nan 3 times a day then though. I was waking up in the morning jumping in my car in my PJs, checking she was ok, going home, going back at lunch, then going back at the evening. It was fine for the first few weeks. Then my Uncle passed away and I was dealing with my own grief along side helping Nan through hers. This, because despite the fact she has dementia much of the time she is aware that Christopher has passed away and she recognises that she was his mum. No-one should lose a child and I can’t imagine how confusing it is for Nan in the times she is lucid and knows what has happened.  

Changes in Nan?

3 weeks after my uncle passed Nan had an episode where she went out looking for him. I say went out, I mean she did leave the house at night but this isn’t the typical dementia wandering (yet). She went to her neighbours house and asked for them to find me or him. I honestly didn’t know what to do for the best, I didn’t know if this was going to be the start of a wandering period within her dementia. I didn’t really want to leave her for both our sakes. I knew that I wouldn’t be able to stop worrying and I didn’t know what she would be like. So I called 111, they decided to have her checked out by a paramedic and she ended up going to hospital with a query infection.

This started a month long battle within the hospital to prove that she was capable of coming home. They were trying to push that she needed 24 hour a day care, couldn’t do anything for herself, couldn’t make decisions for herself and we should put her in a home. Mum and I weren’t having that, we knew that nan was a lot more capable than they were giving her credit for. They assessed her when she had an (at the time undiagnosed) chest infection and I am sorry but when I have a chest infection I barely have capacity so I don’t know what they expected from Nan.

Home care

We pushed for her to have a period of 2 weeks at home to be assessed how she is in her own home. The carer was surprised Nan was how she was because the assessment document painted a completely different picture to the woman that got herself up and (tried) to wash herself on the first morning and get herself changed. It painted a picture of a woman that would fall if she tried to walk alone, not a woman that would walk to her clothing rail and pick a ridiculous amount of tops to put on and then put them on herself. Nan really excelled in the two weeks she was at home and now this has been reduced down to 4 times a day carers with people visiting her at breakfast, lunchtime, teatime and evening. This has been happening for the last 3 and a half weeks and so far so good.

Its taken both Nan and I a little bit of time to get used to having outsider help. The two weeks live in carer was ok because I think we were in the bubble of this isn’t going to be permanent and until we got to the end of it and a decent social worker who I felt listened to use visited Nan at home and said that they were happy for her to stay there, I didn’t feel that Nan was even going to stay home. After all the stress when Nan was in the hospital I didn’t let myself believe that Nan would be staying home.

Distancing myself

The first week of four times a day carers was them getting used to Nan so we still had a fair bit of involvement because they wanted to learn about what Nan likes. I did try and keep my distance a little as Nan needed to see that these nice people were there to help her. She really did fight it, constantly telling me that I had abandoned her and that she thought I loved her. If I loved her I would keep looking after her. To be honest its been a challenge to get her head round the fact that even though she is having these people come and see her we are also still visiting her.

Four times a day care has been happening for nearly 4 weeks now and aside from a few ups and downs we have started to get used to it I think. Nan has a few carers she has built up a really nice rapport with and I am used to letting go control a little. The carers are lovely, I think that has really helped.

Overall

I thought getting carers might make me feel guilt, sort of along the lines of “you’ve abandoned me” comments from nan. But , really I don’t. This was a decision out of my control but it was the best decision for both me and Nan. It was also time, we just couldn’t accept it yet. I am glad we fought hard to keep Nan in her own home and as long as things carry on as they are at the moment we are doing ok. I know dementia is only going to get worse so having that extra support already in place reassures me that when it does we are prepared, we are supported and most of all on the whole we are happy in the dementia world we have been given. ‘

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