Daily life with a poorly DH/partner

My heart goes out to you. And I echo everything you say.
I had many years of this before Paw died 8 years ago.
There were times when I resented it (but fortunately kept my feelings to myself as it wasn’t his fault) but re shielding AC from the reality, I admit to that and so I don’t think they ever fully appreciated the impact on my life or severity of the situation, at least not until close to the end.
I didn’t want to moan to them or seem to criticise their father or in any way blight their memory of him, so I was the one to make allowances and keep bu**ering on.
Would I do it all again?
In a heartbeat.

Thank you Maws. My AC want to know everything. They dont want a sudden unpleasant surprise they are not expecting. I don't pass on the remarks he makes which are upsetting of course, but I don't conceal any more his day to day health and downturns.
They were very unhappy that I concealed a lot of my own health problems.. Couldnt conceal chemo of course. But now I keep them up to date with everything.
Luckily ? They don't regard him on a pedestal. They know his flaws he is human, but of course they love him to bits.

Hard as this is when I think of friends whose DHs have suddenly died that is equally hard as there has been no time for life to wind down.

There must be a lot of GNs in the same position. I salute you all.

I had a friend in this situation and all I could say to her was put your own oxygen mask on first. I had to keep reminding her as her DH had a very sharp temper and had trouble facing his failing health. I’m on crutches at the moment and if someone offers help I take it. People like helping. Occasionally people are surprised to be taken up but perhaps they shouldn’t offer.

Yes oxygen mask on first. No use to anyonr otherwise.
Yes people do like helping. I used to like helping and maybe will one day again too.

And please get all the benefits to which you are entitled. AgeUK, CAB and your local Carer's society can help with that.

Attendance Allowance is NOT means tested and getting it may help to ease the burden on the Carer by enabling them to buy in a cleaner, gardener or other help.

Yes kitty Attendance Allce I held off from claiming. Thinking I am doing what anyone would do for a partner. Misguided.
DH claims it now and it pays for a companion for a day for DH giving me a chunk of day to myself and DH a change of conversation. I am looking at hrlp in the garden for heavy stuff which I cant do now and DH never did.

Also if you can afford it use taxis when needed. It made life easy when DH was hospitalized and it was too hot and I was too exhausted to think of driving safely. It made a very difficult time a bit easier. When I did drive I got a hospital expensive parking ticket for parking just over into a staff area. Too much on my mind! That would have paid for several taxis.

Don't be a martyr. I know taxis are out of the question for some but if you can afford it do. At this stage of life money in the bank is for making life easier.
I try to think of my current life as a job and approach it with sleeves rolled up and try eeally hard not to think. Poor me. Although I have my days.

I’ve lived this life for the past 18mths though it has now come to an end in the saddest way. Your own oxygen mask is no 1 for sure. It is hard so don’t berate yourself when things don’t go according to plan. We’re not angels, we’re humans.

One thing, if your dh’s condition permits, is to try and fit his illness round your life, not your life round the illness, for as long as you can. It’s not always possible because there can come a time when it all kind of runs away from you and the illness takes away your choices.

Thinking of you.

HelterSkelter1

Yes kitty Attendance Allce I held off from claiming. Thinking I am doing what anyone would do for a partner. Misguided.
DH claims it now and it pays for a companion for a day for DH giving me a chunk of day to myself and DH a change of conversation. I am looking at hrlp in the garden for heavy stuff which I cant do now and DH never did.

Also if you can afford it use taxis when needed. It made life easy when DH was hospitalized and it was too hot and I was too exhausted to think of driving safely. It made a very difficult time a bit easier. When I did drive I got a hospital expensive parking ticket for parking just over into a staff area. Too much on my mind! That would have paid for several taxis.

Don't be a martyr. I know taxis are out of the question for some but if you can afford it do. At this stage of life money in the bank is for making life easier.
I try to think of my current life as a job and approach it with sleeves rolled up and try eeally hard not to think. Poor me. Although I have my days.

There are often community drivers available who are loads cheaper than regular taxis and are often more reliable.

My DH does volunteer hospital drives for RVS. And, there are volunteer drivers in our village - i think they are more available than people imagine.

We always say - you don't know what you don't know until someone tells you.

Yes I had local community drivers to take me to and fro for chemo and all associated appts. It was all during covid and I felt happier in cars which hadnt picked up passengers from the aiport.
The drivers were all happy to wear masks.

When DH was in hospital since then it was just easier to use taxis especially as some trips were in the evening.

But I would use volunteer drivers again. It was a comfort as some had been in the same position as I was in. I did know about them already, but I suppose I would have found them by Googling. I dont think there was anything at either the GP surgery or hospital waiting room advertising them.

Sympathies SueDonim. Thank you for your comments.

I am living this life as a full time carer for my DH. There are times I feel overwhelmed by how much our lives have changed since his massive stroke and I do feel cheated when I think of how we should be living our lives . But you have think of ways to lighten the load and capitalise on things you can do together, like sitting in the garden listening to the birdsong or going on short manageable trips to cafes or the park etc., although these trips do need so much forward planning it can be a trial.
My DH obvs can’t drive and I don’t drive so we can’t go far, but family swing by and take us places sometimes and is nice to ho out with my DDs whilst the son in laws keep my DH company.
Don’t dwell upon what you can’t do but think of what you can do.
Sending love to all fellow carers 💐💐

Helterskelter1 we use taxis on occasion, my DH gets AA and it is a really big help.

Another thought is to get people to come to the house if the other half is house bound, a podiatrist, a barber/stylist and so on. Changes the atmosphere for the day bringing new ideas and gossip.