My name is Patricia and along with my brother and sister, we are doing our very best to care for Mum, who is 90 and has vascular dementia. She lives with my Dad and he is showing no signs of memory problems. He is being extremely brave and patient, but I think he is depressed.
Mum was OK, really independent and coping with living at home with Dad until last November when she suddenly took a turn for the worse and now needs 24/7 care. Last week she took another turn for the worse.
I am 62 years old and work full time and my job is stressful and hard. I stay at Mum’s four nights a week and I am there 6 days a week. I am not doing too well - awful anxiety, upset, worry, sleep panics, I just feel so sad for my poor Mum who is desperately distressed and bewildered and hurt.
I am desperate for some support, just to talk and hear other’s experiences to learn from. Maybe there are zoom support meetings I could join?
Thank you for reading this and thanks for any responses
Is mum getting Attendance Allowance?
Claiming exemption from Council Tax due to dementia?
Have you spoken to dad about what he wants, extra care at home, or residential care?
Dad probably doesn’t really see you as a woman of 62, just as someone he remembers being young fit and able.
I remember my mum saying to me “It’s not as if you were 60” when in fact I was very nearly 60, widowed and disabled!!!
Dad will, of course, only want you to care for him and mum, but that’s just not possible.
The stress of caring for 4 elderly parents and our son with LD led to my apparently husband dying of a massive heart attack.
Don’t let this happen to you!!
Thank you for your welcome. I was sitting at home (my brother is looking after Mum tonight) and feeling anxious about Mum’s recent change in her dementia. (Since last week she has become extremely upset and has awful feelings of irrational guilt). I cannot begin to say how lovely it was to come here and find your message.
I am looking forward to joining a zoom cuppa, thank you for the suggestion.
We have visits from OT, the district nurse and the oxygen nurse and regular telephone appointments with Mum’s doctor. We did get daily outside care workers for a while when Mum first got bad, last November, but Mum wouldn’t tolerate them, even though they were lovely.
This whole thing is so distressing. It feels like a shock because Mum was up and about emptying the dishwasher and cooking one week and then a week later, she was in an awful state, having panic attacks, unable to stand up or walk, unable to reason. We got a lot of help then with equipment and from the Doctor and we got on a pretty even keel until last week when it all changed again. I feel so guilty because I took three nights off last week (the first break I have taken from caring in 5 months) and when I got back Mum was so much worse. At least I got caught up a bit with work!
Yes, I am working from home because of the Covid thing and you are right, mainly at my parents house. I haven’t really thought ahead to when I will have to go back (probably next October). I manage to get some work done when I am at my parents, but end up having to make up the time with early starts, evenings and weekends. I live 75 miles from my parents so I do a lot of driving back and forth. I am there Saturday, Sunday, Wednesday, Thursday nights, so travel home Mondays and go back on Wednesday, and Fridays and go back on Saturday. It makes me dizzy! I only get one day a week when I am not either at my parents or driving back and forth.
Sorry, where did all that come from? I guess I just needed to get it off my chest!
I am so sorry to hear about your husband. Thank you for sharing that with me. It has really made me think. I have been having sleep panics, getting up between 4 and 5 am every day because I am too anxious to lie in bed and generally feeling fraught and worn out. My menopause symptoms seem to have come back after being OK for years and they are worse than before. Thank you for the warning and for being brave enough to share it with me. I am thinking I might give up my job. I am reluctant because I really enjoy it, but I am close to retirement age anyway.
Your message is very helpful, really good information. No, no attendance allowance, or Council Tax exemption. I will look into those straight away. Thank you so much.
To be honest, no I haven’t asked Dad what he wants! We have been so busy and preoccupied with Mum! Poor Dad, I will have a proper talk with him when I go home tomorrow.
I will let you know how I get on with the points you mention, especially about my Dad.
Take care and thanks again (I seem to have written thanks a lot, but it is so good to get some feedback and advice) and I really appreciate that you took time to reply
Hello Patricia
Am sad to read your post and the difficult time you are having.
My lovely late husband had Vascular dementia and other health issues. Lost him 2 years ago. It’s very emotional watching someone you love decline in such a cruel way. Honestly, I feel you will need outside help, even though your Dad feels it’s not needed. Very sadly the declines take bigger steps. You really need time to do things for yourself, without guilt, may I add. It’s hard to do but a necessity. Otherwise you will have burn out and not be able to care at all.
Thinking of you
Feeling guilty and inadequate is normal
Feeling trapped in something you can’t control but looks likely to overwhelm you is absolutely the worst feeling imaginable
part of the coping strategy I found was to recognise and understand your own feelings and stress points
Dear Pet66
Thank you very much for your supportive message. I have only just picked it up. Your message was prophetic because things got a lot worse since I posted and Mum went into emergency respite care after some extremely difficult days having to call out paramedics and rapid response on several occasions. We are all in a bit of a muddle to be honest. My brother wants Mum to stay in the home and thinks Dad can now be left on his own, my sister seems to be desperately torn between wanting Mum home and not being able to contribute to caring for her if she does come home, my Dad seems oblivious and just wants Mum home and I feel stuck in the middle. I had to go off work sick because of panic attacks, etc. Urgh. It is so hard! A confusing, distressing, conflicting mess. You are right about needing time to do things for myself. I think I am coming around the idea that Mum might need to stay in the home. I thought if my sister would help out we could get her home, but I don’t think she is able (which I completely understand and have no negative feelings about - I know she is suffering/struggling too). I think that most likely means I will have to move in with my Dad because he won’t be able to cope on his own.
Thank you again for your message.
Patricia
Thank you so much, Vince
I have not responded sooner because events overtook us and it got crazy
You are right - I do feel trapped - how did you know?!
It is brilliant to know I am not alone and I really appreciate your response
Take care and thanks again
Patricia
You cannot move in with dad, you need to look after yourself now. If dad needs help and support, then make sure he gets it, but your role is overseer for dad and mum now, not hands on carer anymore.
Patricia
On the forum it’s often stated that it’s needs not wants.
The needs of your Mother. Possibly a care/ nursing home will be needed where 24/7 care is on hand. Obviously no one wants that for a loved one. My daughter’s and myself certainly did not want my husband to go into a nursing home. It was absolutely needed though. We over saw his care, ensured every thing was in order. We loved him very much. Guilt monster was often on our shoulders, and we had to learn to cope with it
No one wants to get old, to get ill, to have carers, strangers, coming in and out of their home, or to move into residential care, or die.
But someone approaching end of life is hard on everyone, especially where dementia is concerned.
Advanced dementia requires a TEAM of people on duty 24/7 with special skills to keep someone safe and clean.