I really do hate dementia and seeing my poor mum trying to carry on as normal. In the last few weeks she has put antiseptic lotion in her eyes instead of eyewash; managed to force the door open on the washing machine while in full cycle, flooding the kitchen and given the dog an overdose of tablets. Fortunately everyone, including the dog is fine but the change in her the past year has been so dramatic.
The worse thing is that I cannot be there more, I have my own family and work so I try to do what I can but that guilty feeling just doesn't go away. I would give anything to have my mum back to phoning me constantly every day whereas now I have no calls at all. She tells me she has phoned me because in her mind she believes she has.
I got married in September and she found it so hard to interact with other people whereas in the past she would have been circulating with all the guests, chatting away. She loved the day, in her own way, nearly going home in my new husband's jacket!!
I take these moments and keep them with a smile because it keeps me going. But I wish, so much, that I didn't feel so guilty for not being there more.....
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Kettlegirl
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Hello Kettlegirl, I also hate dementia, especially the way it changes the person you love and care about.
Your mum is so lucky she has you because you are certainly very caring and doing your best. Is there anyone else who can go and visit with her or a Centre she can be taken to? There really needs more to be done for dementia/Alzheimer’s sufferers as it’s not going away. Xxxxxx
you can only do what you can do and I am sure you are doing that and more.. She seems to be less distressed by her dementia than you are at the moment although the eyewash can't have been much fun. All these degenerative diseases are so hard to live with. You are so right to keep your memories to treasure later.
It is a difficult journey that you are on, caring for your mum and dad, as well your family. Dementia is a terrible disease and watching our loved ones change is very hard to cope with. I presume that you have been in contact with Alzheimer's Society [GB] if not here's their web link: alzheimers.org.uk/ Hopefully you will find some helpful information there to help support your mum. Yes do cherish those precious moments when they seem more lucid, and more like their old selves. Document this, make a memory book or board with photos, things they have said. This can help both you and them to remember.
As you have found the members here are wonderfully supportive and empathic, and have given some good ideas to think about e.g. Day centre, respite care etc.
Keep in touch we are listening.
Best wishes,
MAS Nurse and Moderator
Hi Kettlegirl,
No doubt about it. Dementia is a nasty vicious thing that robs us not of our loved ones, but of our relationships with them.
I know the guilt of not being able to do as much as we think we should and it can be such a dispiriting thing in our lives, but you know, it wouldn't make a hap'orth of difference if you were living in the same house as your mum. You'd still feel there was something you could have done better. It's called love! Years later I still feel I should have done more for the loved ones I've cared for, and I'm not going to pretend you can ever get rid of that guilt, but I do have a bit of a strategy that can sometimes help with it.
And it comes from years of mindfulness meditation which I've been practicing for much longer than it has been fashionable and mainstream to do so.
One of my meditation teachers once suggested that I acknowledge repetitive thoughts such as guilt, (in my head), whenever I notice I'm having them, something like this. "Oh hello, old friend, I see you're back again with the same old message". It doesn't have to be those words of course. You can find your own phrase. But after you've acknowledged the feeling, let it go without dwelling on it and its associations. It's only a thought, so just allow it to pass. Doing this doesn't mean the thought and feeling won't come back. Alas, it will, over and over again, now and in the future. But if you make it your habit to answer it in the same way and then put it down until the next time it arises, amazingly it does become much easier to deal with.
Your mum would absolutely hate to know how guilty her condition is making you feel. Blame the dementia, not yourself. It's a tough thing to go through; an emotional roller-coaster, not being able to make things perfect for that person to whom you owe so so much and love to bits.
Don't forget to let the emotions overflow when you need to as well. Sometimes there's absolutely nothing like a good blub about the unfairness of life. Your smiles at the good and funny moments are also healing. And do know that our Care Community is there for you. We understand how hard this is and share in the emotions of it all.
I know exactly what you are saying and feeling. Only last night I cried myself to sleep after saying to my husband i want my old Mum back. Mum hasn't had an official diagnosis of dementia but since her stroke in June this year she has gone downhill fast. I had to give up my job to care for Mum. Had to as a week after Mum came out of hospital Dad was rushed in and someone had to stay with Mum.
I stay over three nights a week to give Dad a complete break at night but even when I'm not there im worrying about them. If you want to chat feel free to message me.x
Hi, I really do sympathise with you. I live over 100 miles away from my parents and I constantly feel guilty. When I see them I do as much as I can. I also do a lot of the organising of professionals to visit my dad as he has a palliative care team visiting him often. My dad has a progressive Neurological condition related to Parkinsons called MSA which has changed his personality and his ability to mobilise, walk, communicate and swallow. It is really heartbreaking to see and I was making myself ill trying to do as many things to try to make their lives better.
It is really hard when you have your own family and a job as well. I was sacrificing all my own hobbies etc to be with them. However, you really need to be kind to yourself otherwise you will become exhausted. It sounds as if you do such a lot. You can ask for a care needs assessment for your mum if you haven't already from the Social Services and you might find your mum is entitled to some help. There are lots of memory cafes and activities organised by Age UK and the Alzheimer's Society that your mum might enjoy.
This community is very supportive and it is a great help if you want to let off steam or need some advice.
We all feel enormous guilt even if we are with them 24/7 ..could we do better,could we do things differently,could we not get irritated ,and so on,and in my case my partner is incontinent and totally bedbound as well as suffering vascular dementia.
in many ways it is the carer who is suffering because the patient is well looked after and does'nt have a care in the world.
i'm not complaining but I know as a carer I have aged 10 years in a matter of months.
Some days I have the washing machine on 3 times a day with the amount of bedding and clothes constantly need changing ,and perhaps I shouldn't mention it,but the stench of strong urine is overwhelming,and I use huge amounts of clinical deodorants to get rid of the smells,and I was always so houseproud but that has now gone by the bye.
It will end at some stage,and until then I will keep on keeping on.
I know that is hard to do in practice but you must not feel guilty that you cannot do more for your Mum. Please hang on to the fact that she is so lucky to have you doing as much as you are doing for her lovingly. Many suffering from dementia do not have families that help. Have you contacted anyone about getting some help? Maybe a day respite centre or carers coming in to help if your Mum would let them. The Alzheimers association can be a great help in giving you advice. Please hang on to those happy daft memories as they are what will keep you going. A sense of humour is so essential and it is a wonderful thing to have and somehow gets things back into perspective in a situation that is not often comprehendible. Love and hugs AliBee
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Mum wants to end it all
