refusing to go to day care now

[xXX]

So sad

my mums 93 and ive looked after for as long as i cud but now shes in a home and im so lonley

 

[fizzie]

Yes, the lies are vital to life

That and my lovely GP saying to me that I just need to accept that no matter what I do I am not going to make mum happy - it's harsh but it's true, she isn't ever going to be happy. If I do lots of preparation about something it give her time to think of an excuse. If I spring things on her there wasn't enough time for her to be comsulted and to be happy with the situation. But what I have to remember is that if I gave up my family, my long suffering husband and children, my job and moved in with her 24 hours a day she would still not be happy ( one of us may also not be alive beyond the first week too)

Haha so true! We didn't give preparation - only enough to get ready without rushing and i have to say that as time went on that was quite time consuming - I did get a carer in to do the morning run or I would NEVER have got to work on time and then I used to get stressed and shouty. However, the pleasure that she got out of going out, going to family gatherings etc was worth every minute - even though she talked about me the whole time behind my back - the carers thought it was hilarious. I could NEVER have lived with her in a million years although i did stay nights when she was upset or unwell and I think that prolonged her independence by keeping her confidence. My teenage son used to stay occasionally too just to keep the family bit going - although he slept like a log and woke up one night to find a policeman standing over him (he was only 13) - she had wandered into the back garden and tripped and a neighbour had heard her calling in mid winter and so that was that night that was and the end of a key in the back door - she was completely unharmed and unperturbed and flirted with the policeman for hours. I used to 'walk' her everyday too, just 5-10 minutes up and down the road - boy was she resistant to that but it kept her mobility going. We had a sitting service and they used to take her to lake in the car and then walk her too!

Enough waffling, take care xx

 

[Livveywills]

If you are going to look after her in the broadest sense then as the dementia increases she will become more reliant on you. The reality is that as all other memory references - time, place, family, the senses - fade away there are certain stable people and events in the lives of people with dementia. Without these they can't make sense of the world. If you can imagine that just one of those things 'disappeared' one day, say 'time', have a think about how much of the structure of your life revolves around time - eating, getting up , going to bed, tv programmes, meeting friends, keeping in contact with people and observing time etiquette - try to imagine how totally lost you would be. That's what happens but a hundred times worse because it isn't just time, imagine if you sense of needing to go for a wee went, but the embarrassment doesn't disappear. These people have spent all their lives caring for others, looking after themselves, holding down jobs, being contributing members of the community and then (seemingly overnight to them) all their power which comes from understanding the world around them and contributing to the lives of others, starts to recede - LOST, that's how my Ma used to speak of it. She used to tell me she was worthless in the early days, she said she didn't know 'how to anything anymore". Dementia doesn't take away feelings and emotions. She did 'cling' because she knew that I would do whatever I could to make her life ok (and that may have involved a very hard decision but fortunately for me and for her that didn't happen although it was a close shave) and it was jolly hard work but she taught me more in the last four years than I have learned in a lifetime and taught my teenagers too who also supported her at times.

That doesn't mean that you have to look after her or to accept the resentment of caring. There are so many other options - live in carers, daily carers, care homes, supported living (tricky I have only come across one supported living private flat develpment where they cope wonderfully well with mixed clients including dementia and nurse them to the end - but that is a rarity). But she might need your guidance to keep her on track at the moment and you know her better than anyone so only you can decide how to handle it but everyone will support you whatever you decide x

Sorry I've gone off at a tangent into a bit of a tribute to my Mum !! but your mum will rely on you more because I think you will find that is a natural progression, but that is just my experience.

I appreciate what you are saying. I have been mums main source of care since way before diagnosis. But I am the main breadwinner for our family and I have 4 children of my own plus my niece who I had to take in once mum couldn't care for her anymore. I reached the point of breakdown towards the end of the summer. We live deliberatley a few doors from my mother, and the constant calls day and night the isolating me from the family if she could the demands to go here and there and to have more and more time the halucinations and paranoia the anger and the constant complaining about whatever kind thing anyone had tried to do brought me to a crying wreck in an a and e depatment. I have to survive this dementia for the sake of my children. They lose so much of their mummy to the care of nanny. Since September we have gradually introduced a carer and daycare which have made life survivable - just. My mum doesn't think I'm her daughter - but I am the person who is responsible for her in her mind, and also the person to blame for everything. Because I am on my knees and because she demands more than 100% of my attention when I am with her I have had to step back a little. When I have to go away for a few days to work which I have to do evey now and then my mum was in pieces. By buying myself a couple of days in the week where I regularly don't see her which is what I had done with day care before CHristmas she became less distressed and easier for everyone to handle when I had to travel for work.

Dementia is cruel, the days when I see my mother rather than this bitter manipulative woman are getting so rare. Christmas day evening I sat quietly with all of the conversations I would have loved to have had that just will never be again.

I saw a glimpse of her playing nicely with my 5 year old yesterday just for a few mins with some lego - I just wanted to cry, the same child is the butt of so much of my mums annoyance and disapproval that for her to get a kind word from her nanny is unheard of, but she was so thrilled that she played with her.

 

[fizzie]

I understand - I had two children too and a husband with terminal cancer so i was the breadwinner too. I also live a very short jog away (just as well in the middle of the night lol)

Everyone is different and you need to give yourself the time that you need and your little ones their time too. We only managed it with a lunch club, a carer in the morning to get her ready for lunch club 4 times a week paid for by Attendance Allowance (I had to get to work), a sitting service (free hours from the carers assessment) on a saturday morning or a sunday afternoon (and if I could wangle it both!) and in the later stages a carer two nights a week - the rest of the time she spent the evening with us because it was easier than moving backwards and forwards. It took a lot of juggling but I was determined to prolong it as long as possible BUT and it is a BIG but - it is not for everyone - it was a massive emotional strain and felt like climbing a mountain. You might find that you have a better relationship with her if she is in care - more time to spend together without all the hassle (my carer was arranged privately and she was a million times reliable and a rarity!!!). We had blips of course when arrangements had to be changed and the kids and I didn't get a holiday for over 4 years but that was MY choice. I'm not sure I could have maintained it much longer - we were lucky!

 

[notsogooddtr]

I appreciate what you are saying. I have been mums main source of care since way before diagnosis. But I am the main breadwinner for our family and I have 4 children of my own plus my niece who I had to take in once mum couldn't care for her anymore. I reached the point of breakdown towards the end of the summer. We live deliberatley a few doors from my mother, and the constant calls day and night the isolating me from the family if she could the demands to go here and there and to have more and more time the halucinations and paranoia the anger and the constant complaining about whatever kind thing anyone had tried to do brought me to a crying wreck in an a and e depatment. I have to survive this dementia for the sake of my children. They lose so much of their mummy to the care of nanny. Since September we have gradually introduced a carer and daycare which have made life survivable - just. My mum doesn't think I'm her daughter - but I am the person who is responsible for her in her mind, and also the person to blame for everything. Because I am on my knees and because she demands more than 100% of my attention when I am with her I have had to step back a little. When I have to go away for a few days to work which I have to do evey now and then my mum was in pieces. By buying myself a couple of days in the week where I regularly don't see her which is what I had done with day care before CHristmas she became less distressed and easier for everyone to handle when I had to travel for work.

Dementia is cruel, the days when I see my mother rather than this bitter manipulative woman are getting so rare. Christmas day evening I sat quietly with all of the conversations I would have loved to have had that just will never be again.

I saw a glimpse of her playing nicely with my 5 year old yesterday just for a few mins with some lego - I just wanted to cry, the same child is the butt of so much of my mums annoyance and disapproval that for her to get a kind word from her nanny is unheard of, but she was so thrilled that she played with her.

You are in effect doing 3 full time jobs,no wonder you are on your knees.Can I ask why you want to continue?Is it what you want,what your mother wants,fulfilling a promise made to her?I only ask because it sounds like you are making so many sacrifices to sustain this caring and losing time with your children that you'll never get back.This is by no means a criticism,you are obviously a person with a big heart,taking on another child is proof of that.But you matter too,your mum is not your responsibility.It's hard to say enough is enough but sometimes it has to be done for the sake of the wider family.Your mum is important but no more important than you and your children

 

[RedLou]

Livveywills, much of what you say - that nothing you can do would make your mother happy, that you had a sudden glimpse of the 'old' her - I identify with. I also completely agree with notsogooddtr - your mum is not your responsibility and she does not matter more than you, your OH and your children. Take care.