Dementia is such an odd, awful disease. I’m just struck today (not for the first time) by the spectrum of mental capability my Dad exhibits day to day. There is nothing linear about the decline (well, maybe from a very high level). At a low level – currently serving as his caregiver until we get a professional – I’m just struck by how different he is day to day. One day he’ll do nothing but sit and watch television and really just stare vacantly. Another he’ll be belligerent and angry about the situation (as he perceives it which can also vary from thinking he needs to move to his “real” home or thinking he’s staying in a hotel).
Yesterday he was as close to being my Dad as he has been in 6-9 months. If I wasn’t looking closely, I could imagine that we’d be just discussing golf or the football game or whatever we did 2 years ago. Took his pills by himself, prepared his own meals, did things he hasn’t done in a year (worked out!) and got to bed at a reasonable time.
Today? My Dad is gone. He called me “the electrician” because apparently he needs some electrical work done in his bedroom (likely a burned out bulb LOL). And, he acts as though he’s in a motel and I’m the manager. The electrical work is needed in the “Men’s Room” which, I guess, is the bathroom connected to his bedroom.
Just sad today. I got a taste of how easy and nice things used to be around here when he was still around. But, it also has served as a reminder and I’m more convinced than ever that my time as a caregiver needs to end. He’s only going downhill from here and his needs shagleomegle will only increase.
His physical health is quite good which means 3-5 more years (probably) of … this. Then you have to ask yourself not only if you want to do this for 3-5 more years but more and more and more as his condition declines. I think I have to do what I’ve been avoiding and make 2022 the year of the professional caregiver or even a facility.
Hello and welcome to the forum
I really understand what you are saying.
Went through all of the emotions you go through with my lovely late husband. Just once fortunately he told a nurse he didn’t know who I was. I said to him I’m the lady who has loved you for 50 years. I think my voice triggered something. My heart did a somersault. He had other health issues as well as vascular dementia. Was in a nursing home. I had no choice. However, I could care manage his needs and believe me my daughter’s and myself would soon say if we felt something was wrong!
I could go home and get some rest, treasure the good visits, and learn to take the not so good ones. Not easy and she’d many tears. His needs were priority, which in turn helped me.
You are wise to consider help as your life is important, and as you state sadly dementia will only get worse.
My heart goes out to you
Over the years I’ve heard many heart-rending stories from carers of people with dementia. And although I had a really clear idea of what was coming, it really didn’t prepare me for my Mum’s dementia. We’d known it was coming as her short-term memory has been really poor for years. But when it really hit home my Dad had just died and it was as if someone flicked a switch.
Almost 10 years on, and she can just remember that Dad died then, but she also thinks she’s just seen him. Sort of a Schroedinger’s Dad. And although I’m a typical carer with a dodgy sense of humour, it’s still crushing to hear her talking that way, or telling me completely impossible stories, like puppies using distraction techniques to steal meds from the nurses. That’s been a false memory for at least 3 years now. It never happened. Obviously.
When Mum went into hospital the last time it was obvious she wouldn’t be going home again, but well done for starting the ball rolling and recognising that you need help.
Hello Dennis and others. Fellow carer of person with dementia here. Just back from seeing my mother, placating neighbours and watching some slide downhill. Inevitable. Tough to hold the line of " what I will and wont do for them " . I say to myself " I will not throw myself under the bus for her " but still tricky. Doing what I know is useful. Father had dementia too and very grizzly death in a general hospital. Add in a brother with schizophrenia and carer for him too - I am full up. Self care was to buy a big motorbike. I ring and respond 10 times a day, visit 2 times a week. I was bereaved last year and have to build my own life too.
I worked in mental health for 38 years in dementia care and have worked for Dementia UK charity for last years. So a busmans holiday for me.
I give an unashamed plug for the Dementia UK Helpline - staffed by very experienced dementia nurses.
Having a foot in the professional field and a foot in being a daughter means, sadly, I know how difficult it can be from both sides.
Have their number to hand, and it is not 24 hours but they call back. THey also offer a booking system for a video or telephone call on their virtual ‘clincs’ service which is quite new.
Here is the plug - I dont know if the carers forum will allow this. If not Google Dementia UK - useful stuff.
Call our free Dementia Helpline on 0800 888 6678 or book an appointment for support and practical advice from our specialist dementia Admiral Nurses
My grandma (78) was diagnosed with Alzheimer’s in the past month. She is in early-middle stages according to the doctor. In general she is really forgetful and will ask the same things over and over again, forgets that conversations already happened, forgets how to fix a problem with her phone after I’ve told her many times how to, tries to tell my mom directions while driving even though she already knows the way and has said so, etc.
She had needed a bit more help because she had some major surgery and became less independent because of it, but then when covid happened you could really notice a difference where she became super forgetful and kind of confused. Like for example she saw a reflection of lights in the window and thought there was a car driving towards the house.
She also gets worried when things don’t go according to her “routine” like if someone leaves the lights on, if my uncle doesn’t close the door behind him in his room, etc. She fixates on that kind of stuff especially the lights and the door to the point where she will tell everyone in the house multiple times a day to watch out for the lights & door.
Finally a big problem she has is getting dressed and showering. I’m not sure how much of that is Alzheimer’s, because she has pretty bad mobility in general and arthritis so I think it is more difficult for her to put on clothes but she refuses on principle instead of saying she can’t move or whatever. She says “I’m old and I’m not going anywhere” or “I don’t want to take a shower it’s too hard”. My mom has asked her questions to get her to elaborate like, is it hard to step in the shower? Is it too hot or cold? Do you need a shower chair to sit in? Is it too difficult or painful to reach your body? Etc and my grandma just says it’s too hard. We currently have her showering once a week ideally but it can go up to a month before she will do anything, and usually does not change her clothes more than once or twice a week in addition. She is super stubborn about it. I’ve read that is a common thing in Alzheimer’s but I’m not really sure why or what we should do about it.
What I wanted to know was is there anything we can do to help her/make her less confused? We have a schedule of the days events written on a big board next to her bed with all the things she has to do. She also frequently texts us what are our plans and we go over what everyone will be doing that day. We already take care of all her food, laundry, and cleaning. I thought maybe it would help if she had a hobby to help keep track of time or make days different from each other but she is very ambivalent towards everything and says she has no preferences. Currently she mostly watches TV, but she sometimes does crossword puzzles. Although she said she’s having more difficulty with them recently. I figured something like crossword puzzles would be good for your brain so we encourage her to do them.
Is there anything else I should know that would be helpful??? Any advice, suggestions, experiences welcome! My mom doesn’t really like to talk about it so I want to see if there’s azardate something I can do chatspin myself or we can do as a family without putting too much burden on my mom.