Hi there!
I’m 36 and ‘officially’ care for my husband’s grandma who is 92 with Alzheimer’s. We moved house 4 years ago so she could move in with us (my husband’s mum has clinical depression and could melt down at any minute and his dad has manic depression and had been on lithium for over 30 years so they can’t care for her). I was a doctor of chiropractic at the time and she was only diagnosed with Alzheimer’s after living with us for 10 months.
It was only after I was off on maternity leave last year that we made the choice that I would give up work and become her full time carer as she was getting anxiety about being showered by strangers who either turned up early or late or sometimes not at all (privately paid for it of her savings too). She also suffers anxiety and depression and is on 2 antidepressants for that so any change from plans throws her badly.
Whilst I was pregnant, my husband started to get pain in his hip. This developed into a severe grinding that he was in constant pain that no painkiller would touch. He had surgery when my son was 3 months old but it didn’t work to relieve his pain and he had struggled ever since. The last 2 months he has been unable even to change my son’s nappy and he doesn’t drive so relies on me to drive him around to appointments and fetch anything needed for the house (along with my son in the car).
His grandma and my son I can cope with. It’s not easy but it’s bearable. My husband, at the age of 37 is not the man I married. He expects me to do everything around the house, is constantly grumpy (I get that he’s in pain, I do I really do), had a go when the house is a mess ( he is on the autistic spectrum so is brutally honest and a bit OCD) and constantly asks what is for lunch and what is for dinner. Tells me for example the dishwasher needs to go on (which he’s more than capable of doing!). If I question him he says that because I cooked, I’m the one who made the mess and therefore I should be the one to clear up. Now that sounds very harsh but his rationality is part of his Asperger’s syndrome so its just how his brain works but at the moment it grinds on me.
I feel like I’m his carer and I feel like he just sits around telling me all the things that need doing and for someone with low self esteem I can’t let it wash off. My resilience is generally pretty high but with lack of sleep from a 1 year old and an incontinent grandma, I could really do with his support. He also has a history of depression like guys parents and grandma which had flared up since the failed surgery.
Anyway, my intro has turned into a dissertation so sorry about that!! Needed to vent more than I realised. I have been going to carers therapy once a week for the last 5 weeks which is great but I’ve got a lot of work to do before I stop being so frustrated by my overwhelming life!
Thanks for reading… Well done if you got this far!
Hi Leanne,
Gee, I’m exhausted just reading about your day to day life.
As you say, the biggest issue is your hubby. Do you and the little’un get out of the house to Mother and Baby groups etc, meet friends for coffee etc to have a break from him?
What are the plans for his hip now? Has been referred to the pain clinic? I have experienced severe pain in both my hips and had operations on them (luckily successfully.) At my worst I was on crutches and used a mobility scooter/wheelchair if going any distance. I was a mum/carer and had to manage as best I could. I understand he has his ASD logic, but there needs to be compromise. Could you freeze some dinners that he could heat up, and then be responsible for the dishwasher afterwards for example. HIring a mobility scooter for him, could get him out of the house too and would help his state of mind.
Just suggestions.
Melly1
That is a tough, tough situation.
How about putting together a rota for each day that shares out the tasks out that he can do? It may appeal to the way he thinks. Eg. I cook. You wash up. etc etc.
Also you say grandma was self funding and used to have carers in. How about you spend some of the money she was spending on that on a cleaner to help out around the house and take some of the pressure off?
PLEASE make sure you get out to groups for you and the baby. Your baby is your number 1 top priority. (Followed by you as if you crumble, they all crumble).
Leanne, when I read your post I felt it was a personal tragedy for you, just having to give up work. I had a brilliant chiropractor and have the utmost respect for the profession.
I feel that you need to get back to work, at least part time, to regain some distance from them all, and get some self esteem back.
Whose idea was it to move Gran in with you? I do hope you had some legal help to make sure the arrangement was watertight. Gran needs to go into a nursing home, there, I’ve said it for you.
Then you can enjoy your baby (is it your only one?). It’s a very special time of life, which you can never get back later.
More brutal stuff. Your husband needs to stop criticising and take some responsibility. Does he have sick pay? Claiming any disability benefits. They are provided to get help, a cleaner, a dishwasher, a tumble dryer etc. It’s not fair for him to punish you or make you feel guilty about not being disabled too.
In the meantime, make sure that part of yours is devoted entirely to you and the baby. A good long walk with a pram is wonderful.
Reading between the lines … in case it crops up sometime down the line :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
CHC / NHS Continuing Healthcare.
I’ll reframe from posting any A-Zs on care homes … AGE UK factsheets … I await a possible bugle call ?
Agree with BB - Asperger’s is not an excuse to do nothing, Sure, he may view the world in a different way to a neurotypical person, but doesn’t mean he has the right for you to run around and do everything for him ! You need help and support. Another thought is to get him to meal plan and shop online for the week? Then he’ll know what is for lunch and dinner.
Hi there!
Thanks for the replies, I really appreciate them. I didn’t notice any notifications and my life is so hectic that I forgot Id posted until I came to post again now!
So to update, my 37 year old husband is now pretty much bed bound and hasn’t been out of the house in months. I am pretty much his full time carer and I take him meals up when he’s not sleeping. My son who’s almost 3 now goes upstairs to spend time with him and grandma who’s now 93 constantly asks me how her grandson is because she never sees him anymore. Her Alzheimer’s is worse so the questioning is relentless.
I suppose my new issue is that after another 2 years of my husband deteriorating and now doing nothing around the house and his depression spiraling to suicidal thoughts and a complete lack of motivation I’m now starting to feel resentful of how my life has panned out. I hate that I feel so lacklustre and that I feel sorry for myself. I feel I’m starting to wallow and I’m definitely pushing my husband away but I can’t help it.
We’ve decided now to relocate 100miles away so that I’ll be in walking distance of my 2 brothers and their partners and they’ve 5 kids under 5 between them so I’ll have a lot more support around me. Selling and buying houses pretty much on my own has been so stressful (we put the house on the market a week before covid hit!!
) but we should be moved by March.
I’d love to think that by moving and having a solid support network, that my life will improve but I can’t help but think that its just gonna be same old sh**, different village!!
Anyway, thanks for letting me vent and thank you all for your replies albeit almost 2 years ago!!
Love to all for a prosperous 2021! Xxx