Hello
I am new to this forum & Im 69.
My husband who is 76 has had multiple physical problems over the years and is currently chair bound. he can transfer from chair to indoor scooter to bed & vice versa.
We both lost our previously spouses to cancer and we married almost 3 years ago. Since then his physical health has deteriorated. He had sepsis in 2017 & had to have a replacement hip removed because of infection. He can’t have another replacement for fear of another infection. We have carers coming in each morning during the week to helping him shower & get dressed. It could be said I’m one of the lucky ones to have this luxury.
He is very limited in what he can do now to help himself as his pelvis is disintegrating with numerous fractures. Again the surgeons are reluctant to do anything due to the high risk element of infection or even death.
I am starting to feel quite low & lonely I suppose. I have lovely friends who I don’t see that often as my husband isn’t the most sociable of people!
I have booked myself on a pottery course and am a member of the local U3A, so I can get out for a short while.
I suppose the reason for joining the forum is to share my story as I’m sure there are many people like me out there. I do believe it is hard to understand what we as carers go through physically & mentally until you are faced with it 24 hours a day 7 days a week.
Tank you for reading my story _ I feel better for writing it down!
Hi Christina
You are most certainly not alone, and there are many in here in similar situations.
I’m glad to hear you do get out and about a bit, and have carers, so is loneliness the main problem?
If so have a good look around the forum. There’s members corner where we aim to chat about non-caring things (tho we do lapse frequently)
There’s various games in the go. Feel free to start threads on anything you like, we’ve had everything from bird watching to book reading via garden sheds.
Best way to get involved is just start posting.
Hello Mrs K
Thank you for your support. I suppose I do feel lonely - this caring is a lonely business and I do feel if as if I’m alone dealing with this. Reading other people’s post make me realise I’m lucky so far.
If I’m totally honest the biggest disappointment is that since we’ve been married we haven’t had a married life. G isn’t able to travel for very long in an specially adapted car without becoming very uncomfortable, so outings are few & far between. We sleep in separate room so we can both get some sleep. It’s a marriage in name only. It’s no life for him or me- just as well he enjoys sport on TV & reading the paper from front to back. Hey ho!
I will take your advice & keep posting.
Christina
Welcome to the Forum. I can relate to you saying that your husband is not the most sociable of people as I am in a similar position. The feelings of isolation are common. I have learnt that I have to make an effort to go out, even if he sulks as it is for my own sanity.
The people on the Forum are lovely and not judgemental so feel free to rant if you need to, knowing you are in a safe place.
Hello Melly & Helena
I’m trying to fathom out how to send separate replies on this forum - so hope you don’t mind getting a joint one!
Thank you both for your support - in the few hours since I have joined this forum, I feel stronger in making decisions to do things for me. I’ve applied to do some voluntary work once a week for a couple of hours, and will make myself go for a walk each day even if it’s chucking it down with rain.
The sun has just come out, so I’ll down my coffee, put on my coat & wellies & go!
I hope you have a good day wherever you are.
Christina
That’s great to read, Christina. You certainly don’t waste time. What a great way to start 2019!
What sort of voluntary work?
Decent outdoor wear makes it easier to stick to the walking commitment, whatever the weather. I wear my, “school playground coat,” if walking with S on not such nice days. It’s totally waterproof ( not just showerproof,) and a bit big, so I can fit layers underneath if needed. We have waterproof trousers too.
S is getting very moany, better investigate. He’s on a go slow. I want a walk before dusk ad the cafe he wants to visit closes at 4pm He’s in the bath ad we haven’t had lunch yet…
Melly1
PS joint replies are fine. If you want to make seperate ones, then click on reply, type your reply and click on submit and then repeat the process to send another one.
Hello. I too am new to this Forum.
Last February when I took my husband to our then GP, he looked at him and laughed and said “Well you’re 80 years old, what do you expect? your problems are just old age!”
I made a complaint to the Practice Manager and we have since transferred to another Medical Practice which is absolutely wonderful in every way.
My husband was seen by a Neurologist, who after various tests told him that his problem, a neuropathy affecting his feet and legs which have no sensation at all is now irreversible. My husband is able to walk around our first floor flat with a stick but has to be very careful as his legs give way without warning.
He is unable to get into bed or up from it unaided. We have been extremely fortunate in obtaining a rotating bed which turns by 90 degrees and gets him onto /into the bed.
I am his full time Carer. I’m not complaining, we’ve been married 50 years last October. I am finding things more and more difficult as I have Osteoporosis which is becoming much worse and is very painful.
I do manage to get my husband out of the flat with the help of a lightweight wheelchair. Even that is becoming very difficult.
I am grateful to God for the fact that I still manage to keep Caring for my husband ( I am 84) but sometimes get scared!
This isn’t meant as a moan or a complaint just a ‘sharing’ Thanks for reading/listening
I should add that my husband is really stoical and never complains even though his life has been turned upside down so to speak.
I have obtained a GP Referral to our fairly nearby Gym hoping that this will help to keep me mobile for longer.
Hello Ann
Welcome to the forum!
I’m sorry to hear about your husband. Neuropathy is nasty - G has it one leg which impinges on his transferring.
I’ve only been a member for less than 24 hours and i found new friends already. Everyone is so supportive and they know what each of us is going through.
Please do look after yourself though - whilst we think we can do it all, our body physically & mentally can kick off when you least expect it.
When G came home after 100 days in Hospital I insisted we had carers for the getting up/shower/dressing bit. It meant that I could have ‘me’ time first thing & that in turn made me a ‘nicer’ person ( I don’t do mornings very well).
I remember one of the Drs at the hospital reminding me that I was his wife not his carer - in the nicest possible way. Thats when we decided he would have care in the mornings.
Hello Ann
The Moderators may well separate out your post to your thread to keep things more simple.
My first question to you, is has hubby had a Care Needs assessment and you a Carers assessment from your local Social services? You shouldn’t be having to do everything yourself , it’s not safe for him or for you
Kr
MrsA
Hello -it’s been quite a while since I posted on here. From my first post it was about caring for my husband who is severely disabled.
Since then things have taken a turn for the worse. He has been diagnosed with high grade Neuroendocrine Carcinoma - a rare & aggressive Cancer. He is receiving end of life palliative care in a care home. It quickly became impossible to look after him even with care coming into the home. His 2 children who live in Australia & the USA came over a few weeks ago to see him & during that time we as a family decided with professional support that he needed 24 hour care.
Having them both to stay for nearly 3 weeks has taken its toll on me - I’m emotionally exhausted. Once they had left I felt a weight had lifted off my shoulders.
My step daughter from Australia is coming over again & staying indefinitely. Prior to her saying she was coming over, I had a conversation with my step son about how I was feeling & would they mind if they stayed either with their cousin who is always wanting them for to stay or get an air b&b so they could have space of their own. Step son understands. Step daughter doesn’t and is very hurt that she can’t stay in her fathers house ( the house belongs to both of us & is our home). Tricky.
She is incredibly untidy & treats our home with total disregard as how we like to live - with respect.
I have tried to explain to her my position in this awful situation, but it will take time , if ever for her to understand that I need my space to grieve for my dying husband, & to gather strength for the weeks/ months ahead.
Am I being unreasonable?
I know I couldn’t have my own children staying long either!!
If anyone has been in this position &/or has some advice I would love to hear from you.
How long is it since she last visited? Maybe she’s grown up a bit since then? Sometimes these horrible circumstances can bring the most unlikely family members together and make them behave better towards each other. Make sure she understands what you’ve just explained about needing your own space to grieve and then just treat her politely but coldly if she doesn’t accept gracefully and don’t let it get to you.
Thank you for your replies. It’s great comfort that I’m not being unreasonable.
My step daughter was here about a fortnight ago & is returning in about 10 days, so little time for her to ‘ grow up’ - she’s has always been a difficult ‘child’ to her parents & I suspect she will always be so.
I will try not to to let it get to me - a sensitive soul that I am needs to toughen up!.
Thank you once again - I appreciate your support so much.