I’m a little lost right now, my dad passed away suddenly in his sleep 5 weeks ago, he was 77. We are a close family and I saw him and my mum 3-4 times a week.
My mum has ataxia which means she can’t walk unaided and only very short distances, she also has Alzheimer’s ( though no official diagnosis as she in denial). I knew mum was pretty bad but hadn’t realised quite how bad, dad hid it pretty well, doing everything.
Overnight I have become a carer, I have to manage every aspect of her life, she has no short term memory. She does remember dad has died, but very confused on the circumstances of it.
I work 3 days a week! I’m full of grief for my dad, but hardly have time to grieve as I’m so focused on mum, I am so scared of what is to come. I don’t know the best thing to do.
Currently mum living at home alone and I’m relying on good Will of my 2 sons, and my niece and nephews in there late teens and early 20s to help me care for her. My sons will return to university in September and I do not know how I will cope. She has very aggressive outbursts, doesn’t eat unless food is prepared and put I front of her, she is just about managing personal hygiene but I don’t know how long.
I’ve lost my dad and I’m losing my mum, I want to help her, but at times resent how dependent she is, she doesn’t even acknowledge my upset or everything I’m doing, I am then full of guilt for feeling this way.
I lost my sister to cancer 9 years ago so I don’t have her to help. I’m separated from my husband, I have a partner of a few years but we live separately. I’ve barely seen him since dad died as all my time is spent at work or caring for mum!
Emma
Dear Emma,
4 years ago I was in a similar situation. When my dad died, we suddenly realised how much he had done for my mum. She did not have dementia, but health and mobility problem. She also got very ill the night after my dad had died. The next weeks we had no time to grief for our dad because we needed to look 24/7 after my mum, as well as making arrangements for the funeral and doing all those other things that need to be done after someone dies. It was a very difficult time, and I can totally understand how hard things must be for you.
It is great that you have good family support at the moment, but it sounds like sooner or later you will need to get help in caring for your mum, especially because you also have a part-time job and your sons will return to uni. The fact that your mum has aggressive outbursts is worrying, as is the fact that she won’t eat if she is left on her own. I would think that those 2 facts alone should already be enough to get an assessment for her. Even if she does not consent to it, you can request it on her behalf if it is in her best interest. If you have not done so yet, I would suggest that you urgently arrange a telephone consultation with your GP, and also to contact the Alzheimer Society’s helpline (tel: 0333 150 3456) to find out what help is available and how to get it in place. Your mum may be entitled to a care package. It can be a slow process, and sometimes you have to make a lot of effort (which is hard when you are grieving!) to get support, but it is worth it.
Don’t feel bad about sometimes feeling resentful towards your mum,. I think it is normal to have those feelings, and it does not mean you don’t love her. It is also good to keep in mind that some of the things she does (or does not) say or do, are caused by her Alzheimer’s and that she can’t help it.
Until you can get support in place, all you can do is juggle your commitments and do the best you can, especially in keeping her well.nourished and making her environment as safe as possible. I am sure you are doing a great job.
Sending love and best wishes your way,
Jo
Thank you! I’ll try the Alzheimer’s helpline. We have managed to get referral to memory assessment, but been advised it might take time. I have an occupational therapist coming, but not sure when. You are right it’s hard to keep chasing things up when you struggling, but wil persevere as it wi help in long term.
It’s a huge adjustment, and so very sad, thank you for kind words, it helps!
Do let us know how you get on. You can post on here as often as you want. Feel free to private message me as well. My husband and I have a lot of experience with dementia. He is a carer n the community and also we have we looked after a neighbour with dementia for many years, so that he could stay in his own flat until he completely lost his mobility and had to go into a care home. We have always found occupational therapists very helpful. They always seem to get a lot done very quickly once they have done an assessment, so yes, keep persevering. If it takes too long, you could try speeding it up if you feel that your mum is at risk of a fall at home because OTs can give lots of advice on fall prevention.