Difficult times…

[Kas 0103]

My husband has LBD and was hospitalised following an infection that led to sepsis/c-diff, then he caught Covid and pneumonia. He was confined to his bed for the last week of the year, went into hospital on 1 Jan and came out in 4 March. He wasn’t able to be hoisted out of bed into a chair in hospital as he had a serious postural drop. We currently have carers coming in four times a day. His daughter feels it’s time for him to go into residential care and I feel she is right.

I need to tell him tomorrow that on Monday we’ve arranged for him to go somewhere for some rehab and r and r - unless any of you wonderful people have any better ideas of how to word it?
In fact, if all goes well, he will stay there. I feel like an absolute heel and utterly selfish, despite knowing all the theory! Any ideas how to cope with the next few days would be greatly appreciated… x

 

[LynSH]

i don't feel you should feel guilty although I know you will. Your OH requires more help . Daughter agrees so you have support from family. Guilt is ever present when you're a carer but think of yourself too. I was a physio before I retired and saw people who were carers worked themselves into the ground. Look after yourself too.

 

[Kevinl]

Well you're not utterly selfish. or a heel, quite the contrary, take that from me. Sainthood status mark 1 from me for all you've done. K

 

[anaworm]

I wish you the very best of luck as it is not an easy journey. I have done this once when my mother went into a home here in France where we live - it didn't work out for us so she was back home in 12 days!!! 6 months on I am now just starting the process of getting her into a UK home and I dread the conversations I need to have and the fact that I need to get her on a plane and then exit stage left with no return for quite a period of time. You can think yourself round and round about how you should carry on and its not too bad on the good days etc. etc but the reality is you know in your heart of hearts that this is not fair on anyone and you too deserve to be considered, You deserve a reasonable quality of life as well. Your daughter is right behind you, everyone knows you have done your very best and some to be honest with the situation placed at your door and one day you will be proud of yourself, your grit and your resilience to last this long. You have been a loving partner and will continue to be a loving, caring partner but with a slight different residential set up. This will allow you to breath and get some better perspective, it will allow you time and choices you forgot you could have and are entitled to. You are a better person for making these decisions for everyone - please remember that. Good Luck and take care

 

[Kevinl]

So is that a yes. K

 

[Kas 0103]

Well you're not utterly selfish. or a heel, quite the contrary, take that from me. Sainthood status mark 1 from me for all you've done. K

Thank you! I’m guessing you’re speaking from personal experience… Not what either of us expected or wanted, just trying to make the best of a bad job, I guess, so that my husband can hopefully receive the physical care I’m not able to give and help to recuperate to the best he can be, under the circumstances. It seems like a caring place, so fingers crossed, eh?

 

[Kas 0103]

I wish you the very best of luck as it is not an easy journey. I have done this once when my mother went into a home here in France where we live - it didn't work out for us so she was back home in 12 days!!! 6 months on I am now just starting the process of getting her into a UK home and I dread the conversations I need to have and the fact that I need to get her on a plane and then exit stage left with no return for quite a period of time. You can think yourself round and round about how you should carry on and its not too bad on the good days etc. etc but the reality is you know in your heart of hearts that this is not fair on anyone and you too deserve to be considered, You deserve a reasonable quality of life as well. Your daughter is right behind you, everyone knows you have done your very best and some to be honest with the situation placed at your door and one day you will be proud of yourself, your grit and your resilience to last this long. You have been a loving partner and will continue to be a loving, caring partner but with a slight different residential set up. This will allow you to breath and get some better perspective, it will allow you time and choices you forgot you could have and are entitled to. You are a better person for making these decisions for everyone - please remember that. Good Luck and take care

Thank you for sharing your experience and for your thoughtful words too. It isn’t something any of us do lightly, is it? So much pondering of possible alternatives, trying to weigh up the ifs and buts. I was pleased that my stepdaughter and her husband did all the research into local places, the one we have chosen is the one where my son-in-law said he would like to be, as and when, which seemed like a reasonable recommendation!! I liked it very much too and am trying to close my mind to the exorbitant cost and hoping it all works out... I really hope things go more easily with your mum this time!

 

[Kas 0103]

i don't feel you should feel guilty although I know you will. Your OH requires more help . Daughter agrees so you have support from family. Guilt is ever present when you're a carer but think of yourself too. I was a physio before I retired and saw people who were carers worked themselves into the ground. Look after yourself too.

Thank you Lyn, I really appreciate your kind words. I’ve been sleeping on the sofa since OH came home from hospital, just in case he rolls out of bed - he’s on a bed that lowers to the floor with crash mats. This morning I awoke at 2.30 still dressed and with the lights on! I went back to sleep for an hour, but woke up again and ended up ironing labels into my husband’s clothes… I will take your advice about looking after myself too!

 

[maisiecat]

My husband has LBD and was hospitalised following an infection that led to sepsis/c-diff, then he caught Covid and pneumonia. He was confined to his bed for the last week of the year, went into hospital on 1 Jan and came out in 4 March. He wasn’t able to be hoisted out of bed into a chair in hospital as he had a serious postural drop. We currently have carers coming in four times a day. His daughter feels it’s time for him to go into residential care and I feel she is right.

I need to tell him tomorrow that on Monday we’ve arranged for him to go somewhere for some rehab and r and r - unless any of you wonderful people have any better ideas of how to word it?
In fact, if all goes well, he will stay there. I feel like an absolute heel and utterly selfish, despite knowing all the theory! Any ideas how to cope with the next few days would be greatly appreciated… x

Hi @Kas 0103 , I had to do this with my husband in August last year, there was no choice for either of us for him to come home because of his psychosis.
I have always stuck to the rehabilitation story and it is easy with him as his Parkinsons is late stage so mobility is a huge issue. I proactively draw him into the discussion so we exercise every day and are working towards lunches at home.
I would like to see that our relationship is warm and companiable again as all the conflict when I was his carer has gone. I look for topics to discuss each day may be nature related,sport related etc.
I am glad your daughter is supportive my children are too and its massively important as the next thing will be for you to look towards taking care of yourself.
Take care

 

[Grannie G]

Hello @Kas 0103

I agree with what you are planning. I told my husband he was going into a convalescent home to build up his strength. I said it was doctor's orders.

After the first few days, he was absolutely fine and we had the best four years following ten years of challenges.

Good luck.

 

[Kas 0103]

Hello @Kas 0103

I agree with what you are planning. I told my husband he was going into a convalescent home to build up his strength. I said it was doctor's orders.

After the first few days, he was absolutely fine and we had the best four years following ten years of challenges.

Good luck.

Oh thank you for your reassurance, that makes me feel hopeful! Told him this morning, I think he understood but he hasn’t mentioned it since… Keep your fingers crossed for us for tomorrow!

 

[Kas 0103]

Hi @Kas 0103 , I had to do this with my husband in August last year, there was no choice for either of us for him to come home because of his psychosis.
I have always stuck to the rehabilitation story and it is easy with him as his Parkinsons is late stage so mobility is a huge issue. I proactively draw him into the discussion so we exercise every day and are working towards lunches at home.
I would like to see that our relationship is warm and companiable again as all the conflict when I was his carer has gone. I look for topics to discuss each day may be nature related,sport related etc.
I am glad your daughter is supportive my children are too and its massively important as the next thing will be for you to look towards taking care of yourself.
Take care

I’m so pleased it’s working so well for you, even if it isn’t what you’d have wanted in an ideal world. Your words have helped reassure me, thank you! I know lots of people have gone down this same path, but it’s different when it happens to you, isn’t it? I feel a bit fragile, but I know it’ll be ok…

 

[Grannie G]

Everything crossed for you @Kas 0103. 🤞🤞🤞