I am new to posting here but have been reading the threads for a while. I'm not a carer but my aunt has Altzheimer's and I would really like to express my feelings about this. I don't feel I can talk to anyone about this in real life so I just want to rant a bit. I hope it's ok to do this here Please forgive me if it comes across a bit me, me, me but I have so many thoughts and feelings right now that I need to get out.
Anyway growing up I was very close to my aunt (my mum's sister). She and my uncle didn't have children of their own so they always 'spoilt' my brother and I. My aunt visited every Saturday after doing her food shop with bags of sweets, cakes and goodies. This was the highlight of my week as a child! I used to go and stay at her house in the school holidays, where I had my own room. I remember that house well and that I used to have a Flower Fairies colouring book there that we would do together. There were always crossword and puzzle books there too. As a teenager I would stay there and we would get takeaways and videos. At Christmas they always used to buy my brother and I the best presents. My favourite Christmas memory is of getting a Barbie Doll house and a Storyteller book collection. It was so exciting!
My relationship with my aunt was extra special because I didn't get on very well with my mum - I often wished my aunt was my mum instead. My mum is a short-tempered and fiery person whereas my aunt is very calm natured.
Anyway, while I was at uni my aunt and uncle moved away about two hours from my parents' house. I spent several years travelling/ moving around and eventually settles in London about an hour and a half in the other direction from my parents' house. Because of the distance between us we would only really meet up at my parents' house. They would always come to visit whenever I was there and we always spent Christmas day/ Easter etc together.
However a few years ago (I'm not sure how many) my uncle became increasingly ill with diabetes to the point he could hardly walk. My aunt gave up work to become his carer. Around the same time she was diagnosed with leukemia, but it was kept under control with drugs. All these things were kind of brushed under the carpet in my family a bit because I come from a family who doesn't discuss emotions at all. So we just carried on as normal really although I felt sad for them. In away I was still stuck in the role of child in the relationship - not really being told what was going on.
When my first daughter was born they adored her and spoilt her just as much as they me when I was a child. Her birth brought a lot of joy to our family.
Looking back I think her behaviour was changing gradually for a long time. But it was about two years ago that I really noticed something different when we were visiting my parents. She seemed a bit disorientated and confused and kept forgetting people's names. She was around 65.
After that she began giving us presents of things from her house like ornaments, soft toys and broken decorations. She would wrap up big boxes full of things like this to give to my daughter. At the time I didn't know how to react. I would say thank you but it was a bit awkward and I felt embarrassed. At this point we didn't really know what was wrong - I thought maybe her drugs were making her confused or something. I had no idea of the seriousness of what was happening.
At one point she would send letters to my daughter on a regular basis. The envelope would be written wrongly and the writing all jumbled. She sent photos of her dog and pictures of dogs cut out from magazines. I am ashamed to say that at the time I found her behaviour strange and embarrassing. Now I would do anything to receive one of those envelopes through the post. I realise now that she was showing her love for my daughter and me and giving us everything she could. It was so kind and loving and I feel so guilty for my reaction. I think I was just scared of what was happening and the way that these behaviours crossed conventions of usual behaviour.
Also she would ring me a lot sometimes making no sense. Again I am guilty to say that I sometimes hurried her off the phone or even asked my husband to say I wasn't there a couple of times. I'd do anything to chat with her on the phone now however rambling it was.
I became pregnant with my second daughter and my aunt was increasingly confused when I spoke to her - she thought I lived at my parents' house and was worried about the birth. She would repeatedly ask me when the baby was coming and if it was born yet - she didn't really seem to understand.
Shortly after my second daughter was born I saw my aunt at my parents' house in July 2010. She had lost a lot of weight and looked old beyond her years. She was disorientated and different but still herself. Then I am ashamed to say I didn't see her again until Christmas. We went away in August then in September my older daughter started primary school. We didn't visit my parents until half term in October and my aunt and uncle were not well and didn't come. I was very preoccupied during this time dealing with a new baby and also with my daughter struggling to settle into primary school and being found to have special needs. I went through a difficult time suffering post natal depression. I know I'm making excuses here but I'm ashamed to say I didn't talk to my aunt much in this time. I had no idea that her condition would degenerate so quickly. I suppose I thought she would just remain the same.
When I saw her at Christmas she was like a shell of her old self. She had lost lots of weight and looked in her 90s. She could hardly say a sentence and was extremely disorientated. Alot of what she said hardly make sense but I would just smile and nod and go along with her. We went for a walk together around the block. Despite her confusion I could still feel her love. She gave me three Christmas cards (all the same design) - one of them had a gift label sellotaped inside it. She also gave me a gift wrapped box of chocolates, an outfit for the baby, two children's magazines for my older daughter and a Lynx set for my husband. It must have taken her a huge amount of effort to get these gifts.
After this time when I rang I didn't really think she knew what i was talking about - she would just be saying 'yes, yes' etc. A couple of times I called and she was very keen to get off the phone and just said things that didn't make sense. I sent her some pictures of the children in the post and when I spoke to her she said 'whose that boy with them? (it was me). I heard from my mum that she had wandered away from home a few times and been brought back by strangers. She would go for walks at night time.
My mum then told me that she was going to a CH for a weekend to give my uncle respite. However when she got there she didn't like it and my uncle picked her back up. A few days later she was sectioned.
It was hard for me to take on board that my aunt was now in a home. I couldn't pinpoint when things had got so bad - it seemed to have gone so quickly. It has now been confirmed that she is never coming out and will be moved to a permanent place.
I went to visit her there and it was very sad. I don't think she knew who I was. I asked her where her room was and she lifted up a cushion on a chair and said 'oh dear I can't find it'. I took a magazine with me and flicked through the pages. She would just say 'lovely, I like that' to all the different pictures. She had a teddy with her which she kept stroking and cuddling and calling by the name of her dog. I found it uncomfortable sitting there with other residents one of whom was aggressive, walking around and intruding on us. It was a strange situation and so sad. At the same time it was nice to sit with her and hear her voice even if she didn't know who I was anymore.
I feel so sad that she doesn't know the children anymore and will never know my baby daughter. Children under 16 are not allowed at the unit so I guess she will never see them again.
I wish with all my heart that I had called more, visited more, been there more. i wish i had supported her more. I want to go back in time and be there for her, spend time with her. I want to eat the trifle she made every Christmas one more time.
I am grieving and cry privately every day and night. I lie in bed thinking of my memories of her - unable to believe that person is gone. I dread Christmas when she won't be there.
I also feel so sorry for my uncle who is disabled and on his own. To make things worse my mum doesn't want anything o do with him as she has never really approved of him (he has always been controlling of my aunt). I called him this week and he is just sitting around watching tv every day. One of my cousins who lives close drives him to see her at the weekends but she doesn't know who he is. He was particularly upset that he took their dog there (which they treated like a child) and she wasn't interested. He is also so shocked that she degenerated so quickly. Nobody had any idea that this would happen. He told me things I didn't know like that she would try to make tea and just tip boiling water everywhere etc. She looked after him for so many years and now he must feel so alone.
I'm sorry to ramble on so much but I have noone to talk to about any of this. I am not close with my mum and it is taboo to talk about feelings in our family (to the extent nobody even cried at my grandad's funeral - I cried later privately). I feel like I took for granted my relationship with my aunt and assumed she would always be there. It is only now I realise what a big part she has played in my life and what a special person she is/was.
Can I just ask - now she doesn't know who I am and her old self is gone I have considered her gone in a way. I have even wondered if it is worth visiting if she doesn't know who I am. However reading on here it seems many people continue to have relationship with loved ones they are caring for. Can anyone give me advice with this?
To be honest I don't think she has much longer. My uncle told me that the drugs they were giving her had a bad effect on her leukemia so they have stopped them, but this has made her restless and irritable. She constantly walks around and won't sit still.
Thank you to anyone who has read this far. Sorry if this was the wrong place for this. It feels good just to rant my feelings. Any advice or feedback on this situation would be greatly appreciated.
