Feeling trapped

[Angielou]

Im 52 years old and my 56 year old husband was last month diagnosed with early onset Alzheimers. I think we are at least 3 years into the disease as he's been forgetful, confused and incredibly frustrating for me to live with for several years now. I suffered a large spinal injury two years ago and was in hospital for three weeks and he barely coped then and I was fortunate my friends rallied to look after my children during the critical time I was in hospital. Once home I had to force myself back into action as mother, cleaner, taxi driver, cook and general bottle washer as he was incapable of doing much. Things are much worse now with him and sadly if he didn't have the disease Id probably leave him as he isn't really much of a husband to me, just the biological father to my children. I know if I left that would upset my children and leave him utterly floundering so Im kind of trapped here. Im the only person I know of my age who is caring for a husband, not a parent, so Im feeling a little lost myself. He was prescribed Donepezil which he took for a month but it didn't agree with him (stomach cramps & blood in stools) so on the orders of the GP he stopped taking it. Nothing has been prescribed in its place, which doesn't seem to bother him, and he hasn't an appointment to see anyone at his memory clinic until June. Should I be pushing myself for something being prescribed for him? Do other options exist and have people found they helped their loved ones etc to be less confused and more obliging?

Hi mummy dash
Your post really struck a chord with me. I am 52 and my husband is 66 - diagnosed 3 years ago. We have one son aged 10. I work as a part time teacher but since lockdown have not worked outside the home at all and won't again until August. I am the same age as you and just before his diagnosis I had a mastectomy and felt similar anxieties as I was in hospital for 6 days. I feel trapped too and my circle of friends is getting smaller as I'm fed up of the subject of husband. Everyone asks "How's X?". What about me? He doesn't take any medication and I worry about the effect his vagueness has on our son. I think, but not definitely, that I have to look after myself better. I've tried meditating and that is lovely. Anti depressants too - don't work anymore. Counselling - good but I have to pay for it and it's expensive. Finally - I've got a very unhelpful habit of thinking that life would be so much more tolerable if only I could think of what to do to make it better. I know that rationally this quest is nonsense but sometimes forget.
I'm sorry that this is not offering any help but you are certainly not alone. I'm going to try and go away for a day or two when lockdown allows and ask husband's sister to look after family. Not sure where or when yet but that kind of keeps me going. Do you have anybody that could do that for you?
Good luck and loads of empathy from a fellow carer of a younger person. Big hugs x

 

[Armenos]

hi we are in our 70s and have had a busy life, and just ready to retire and move onto doing more things as I had hoped there was more to enjoy. FEELING TRAPPED is possibly the worst feeling with a spouse who has nothing to say and nothing to share.. How do you all cope?

 

[canary]

Hello @Armenos and welcome to DTP

You have to find some time and something just for yourself. It sounds selfish, but its not - its self care. We who have spouses/partners with dementia need to remember that they can no longer fill any need of ours. It is no longer a partnership, so we have to do things for ourselves or we will become empty and no longer able to give.

I have 2 hours in the mornings between me getting up and taking him a morning drink to get him up. It is an oasis of calm before the storm. Once everything opens again OH will be going to day care. He is not keen, but I am selling it as club and I know they do woodwork there, so I am focusing on that. I think it will be good for him to meet others (not just me) and it will give me some time to do something else and not have to have half a mind on what he is doing.