I sympathise with you AnimalLover. I seem to have been caring for ever. My adult daughter has learning difficulties and autism. She lives mainly with her partner in a flat a few miles away but needs lots of support. I cared for my very elderly Mum for 14 years alongside my daughter.
Now I have been caring for my husband since November after he had a severe stroke. So I am pushing wheelchairs, toileting, strip washing, dressing him etc and I am so missing meeting up with friends, going to Aqua fit, taking a walk with my neighbour, browsing around the shops. I get out now once a week to do the grocery shop but it’s a rush. Last week I managed to go for a day trip on a coach with a friend as we booked it last summer. It was lovely to have a whole day to myself and my first real outing since Nov!
Sadly, there are loads of us in the same position and for me, it is exhausting and I worry that I may not be able to do it much longer. I am 71 but generally quite well although I get very tired.
@Penny I sympathise. I think what we do not take into account is that care needs usually increase? Therefore what we could do at say 60 is a push at 65 or 70.
When I first started caring for my Mum I was in my mid 50s. mum was only about 8 stones so quite easy to push about in wheelchair. She could also use both hands and both legs unlike my husband. He is also about 4 stones heavier.
This time around I am much older and not so strong and I get very tired.
We are doing as much physio as we can to get him walking again and we are having our last visits next week before handing over to the Community team.
Sounds very difficult, very draining, Penny. I feel for you. Will he stay at home or go into a care home?
I am watching my husband sitting on the sofa with his head on his chest and don’t know why he’s getting worse. And neither does anyone else. Going to try to persuade him to come out for a walk now.
Leni
@AnimalLover My 86 year old husband ordered a saw off ebay. But it is self assembly so watching him trying to put it together is an ‘experience’. Heaven knows how he will cope if he tries to use the steps. He wants to cut some branches off the tree at the top of the garden. I did suggest we get a price from a Garden Maintenance Company. Guy who owns it lives up my road and it is a small business. But he insisted if he got a saw he could do it himself!!! I wish I had more compassion but I only feel intense dislike and frustration. Of course if he falls or cuts himself - he is on blood thinners I will end up being blamed. I weight 7st 7 - no way dare I try and take the saw off him.
Having a bad time today. I hate bank holidays cause they disrupt my routine. My partner is feeling bad today. WE’re members of a support group called ‘Life on the Level’, which is for people with balance conditions. Well, he should be the member but he won’t so I’m stuck trying to find solutions. In that group, they put people in touch with each other. He won’t have anything to do with that. I’m trying to find an audiobook that might help him; he says he can’t read print. Right now I’m trying to find support for myself. I have support here and it’s wonderful. So glad I found you! I want to make him understand what a burden he’s placing on me. He doesn’t understand that. I’m just hoping he’ll/we’ll find something that he will like and be able to do with others, and get off my back.
@AnimalLover It can be very hard with regard to Bank Holidays. I always struggle tbh especially with Xmas.
Do you use Facebook? If so worth looking if they have any support groups. I use one for ‘Cats on Thyronorm’ and it has been very useful and informative with regard to managing Aslan’s thyroid issues.
I can only suggest you go out on your own as much as you can and pursue YOUR interests. I have totally given up re my husband as his ‘outbursts’ make him a nigthmare socially. I have to take him to the Book Club I chair as it is in the evening. But I ended up giving up Rotary as he did not like the socialising. Frankly I regret this now. I would love to go to the local PC meetings but the one time I took husband he threw a strop and went and stood over a local Councillor who was sitting down. I said afterwards that it looked as if he was trying to intimidate her and he said that this is what he wanted to do. At the Book Club dinner 3 members asked me not to seat them next to him.
Is your husband happy not to socialise? Before his health issues did he like to socialise? TBH E never was very social. Maybe you should ‘step back’ and just leave him to it? I tried to encourage E to consider a Age UK Befriender but he was not interested and tbh now with his deafness there is little point.
Can only send cyber hugs. Can you find anything nice to do for the next Bank Holiday? For me it is try to arrange things socially for the days before and after and make sure I have a good supply of books in and treat myself to a nice bottle of wine and some luxury ice cream.
Yes - Facebook. I use it sometimes. And WhatsApp. Husband (Ali) used to be very sociable but not now. If I could just get him to go to a Zoom U3A group— we have a photography group in which we show our photos on Zoom. He doesn’t have to show; he could just join me and watch. But he won’t. Thanks for the cyber hugs. They mean a lot!!
@AnimalLover It is sad if he used to like going out and I can understand why you find it hard to leave him alone. But you can only support and encourage him to get involved - you cannot make him. I would definitely urge you to go out as much as you can to preserve your own sanity. Even if it is only for short periods.
I think with my husband it is a ‘control’ thing. He finds it hard to accept that I am no longer the ‘Subservient Little Drudge’ that he reduced me to until relatively recently when I started to fight back. Having me told constantly that ‘no one will believe YOU - I was a MD of a PLC and you are a nothing’ he now sees me having real friends. He resents this a lot I think. I do feel he is lonely but he does spend time on a Space Forum but unfortunately often falls out with the other posters, maybe due to his ‘tunnel vision’? I really see myself as Professional Carer rather than a ‘wife’ and in a weird way this has helped me cope as I no longer expect companionship from him. I tried taking him to the local shop with me but he was so slow walking and seemed annoyed at me saying hello to any dog walkers, have stopped asking him now. Also it is not easy to get him bathed and dressed. It is much easier to deal with any incontinence issues if he has his dressing gowns as I can easily wash them.
You have to stay strong and make plans for the next Bank Holiday. Thankfully last week I had a lunch out on the Wednesday and a Coffee Event on the Friday and that helped plus I am meeting a friend for Coffee tomorrow then have the Book Club and this has helped pull me through.
Oh, I don’t mind leaving him alone. HE doesn’t want to be left alone and he wants me to be there. I think he’s perfectly capable of being alone. He’s afraid of falling. But he doesn’t fall. It’s just severe anxiety. Any meds he takes for him make him feel sick. As for his personal needs, he does all of that by himself. This is why I wondered if I’m really a carer. He cooks, though not elaborately like he used to. He drives but won’t go far. And he shops. And he looks after the cat. He doesn’t trust online shopping. It’s hard to explain. And it’s hard to get it across to professionals. He was given new physiotherapy exercises last week. They entailed moving his head rapidly from side to side while reading words off a card. This made him unbearably sick. I think he should tell the physio; not sure that’s possible. It’s a vestibular physio. I think if he could go into the exercises gradually it might be ok. But I’m not sure. Your husband seems to be in worse shape, but they’re all different, as are their conditions.
I would avoid the word “burden”, rather say we are BOTH desperately affected by his condition, everything has changed for both of you and you need to fight it together.
Are you a carer? Is looking after him significantly affecting you? Absolutely. So you are a carer.
However, if he can still drive he isn’t as unwell as I first thought, and most definitely doesn’t need you there constantly!
Is there a mental health issue developing?
@AnimalLover I have to agree with BB it does sound as if there could be a mental health issue. Do you think he is depressed? I can understand his fear of falling but would an alarm pendant be an option? Might make him feel safer when alone?
Definitely a mental health issue. Severe anxiety and depression. Which is why he wants me there all of the time. A lot to figure out. Thanks for your support. This condition has been developing for years. In the pandemic we used to take long walks. These gradually got shorter. He has multiple illnesses: psoriatic arthritis, atrial fibrillation (controlled with a pacemaker) type 2 diabetes (controlled with diet). He says he can’t sleep (you could have fooled me) and really he has to take relaxation exercises on board. We go to bed at 10 cause that’s when he sleeps. I read until midnight. So have a good night. And thanks!
I guess I have to try to be more compassionate. But he absolutely does not need me there all the time. And he doesn’t actually fall. Just fears it. I am going out now to my singing group. He’s had to accept this though he doesn’t like it. And I feel soo guilty. As well as resentful.
You might be right, Bowlingbun. Mine is scared something happens to him in the night or when I am not there. But I counter this with, ‘Do you expect me to sit and watch you 24/7?’
So far, he can see the logic in this!
@AnimalLover I am sorry that he is unhappy but why do you need to feel guilty? You have a right to a life too. I honestly think we are better Carers if we are ‘allowed to escape prison’ even for short periods. My husband does not accept it either. I just PRAY he sleeps when I go out. Have to take him with me tonight and just hope he does not throw his toys out of his pram. Senile Toddler strikes again. Seriously I know it is not easy as you sound a nice person with a lot of empathy, but sometimes we simply HAVE to put on our ‘big girls pants’ and just do what is necessary to keep us mentally healthy as we have a right to a life too.
