Nursing homes

[exhausted 2015]

Am in a total muddle. Mind in turmoil. I am so amazed at the many people who care for their loved ones at home. The words familiar surroundings breaks my heart. OH does not really know where home is but perhaps on a deep level, he is aware of it.

Very few people seem to have loves ones in CH or NH and if they have, are spending long hours in CH or NH with them. What on earth is wrong with me that I don't seem to have the courage/ backbone/ whatever to know I can care continuously when other people are coping with end of life care at home? Am angry with myself as I never backed away from challenges before or didn't finish whatever I set out to do.

If I decide on NC, then after I die, home etc will be sold to pay remaining loan for NS. I will be depriving my son of inheriting his home.

Am now wondering if I could get private carer to help me? And continue as long as I can manage it financially?

Respite have said that it is impossible for me to continue but of course it is up to me.They had to give OH extra supervision this week.

A man who was so involved with all aspects of life and now just fixated on tiny things. No sustained interest in anything and he looks so lost. I feel so guilty even posting this message. I can't do anything today... Nothing. Sitting under duvet....crying. Trying to make up my mind...will I post this msge or not? I don't want to upset anyone on forum. I can only admire how amazing everyone is.

Please if possible can someone tell me how I can continue to care for him at home like so many of you do? I completely understand if there are no replies to this post. Honestly. No offence will be taken. I just need to write it down. Yea I could pop it into a notebook. Maybe in some small way, this post will help someone else who may be in the same situation. If OH is in NH, then I know I will want to be with him every day. Then I will still not give myself a chance to feel better and stronger. I admire those of you who have people in Nursing homes and spend long hours every day with them.

Am so angry as well that there is little health care for vulnerable people, having worked for a lifetime, paid taxes etc and then at the end their home has to be sold for health care.


What skills do I need to develop? What am I missing? But as I have already said, I understand. Sometimes there are questions but no answer?

To all of you who have helped me this far on my journey, thank you.

Aisling

Hello aisling,I have no advice I can just offer support, I am going through something slightly similar with my dad ,I have cared for him for nearly eight years but after a long spell in hospital with many other health problems apart from mixed dementia I was advised by his consultant that it was time for 24 hour nursing care which he is now being assessed for...but it has broke my heart, I feel defeated and dearly wanted dad to spend however long he has left at home with me...but its not to be, I do intend to visit every day when he does go into nursing care until the end but like you I feel that I am weak and couldn't see it through.... If only my dad would sleep at night amongst other issues I would of been able to see it through... I do hope that you will find the the solution... I too am angry with myself...I think many of us must of gone through this ..p!ease stop beating yourself up xxxx

 

[LadyA]

Hi everyone. A million thanks for such brilliant replies and ideas. Thank you Lady A for so much information.

I will post again later on when I can.

I have locked up home and bailed out to my sister for the night. In a warm bed now.

Blessings to everyone and thanks to all.

Aisling xxxx

Good plan!!

 

[1mindy]

I can see exactly how you are feeling,and I too looked at others who cope with so much and thought I must go on ,because they do . Have enough money for a few years care but after that the inheritance will be eaten into.
Both our son and daughter ( 24 and26 ) said they would rather have dad in a home and get me back than for me to plough on and they are grown now with a life time of their own to earn their own money. Our money is just that ,our own.
Didn't make the decision easier? No. Does it in two long days make me feel better ? No I have slept less . Have they both givenme100 % support ? Yes they have.There will be light I'm sure, you just can't see it yet.

 

[Aisling]

I can see exactly how you are feeling,and I too looked at others who cope with so much and thought I must go on ,because they do . Have enough money for a few years care but after that the inheritance will be eaten into.
Both our son and daughter ( 24 and26 ) said they would rather have dad in a home and get me back than for me to plough on and they are grown now with a life time of their own to earn their own money. Our money is just that ,our own.
Didn't make the decision easier? No. Does it in two long days make me feel better ? No I have slept less . Have they both givenme100 % support ? Yes they have.There will be light I'm sure, you just can't see it yet.

Thank you Mindy.

Aisling xx

 

[Aisling]

Me again

During these days of Respite, the demons are back again. Sorry. My brain knows T needs full time care or care that I am not able to continue. What is wrong with me? Why can't family help? My heart asks why can't he be minded at home? The odd person who sees him says he is grand.

I stayed a night with my sister and it was good. I cleared my head..... I thought....

Am on my own today, rattling around the house and falling asleep.

Aisling

 

[bemused1]

Me again

During these days of Respite, the demons are back again. Sorry. My brain knows T needs full time care or care that I am not able to continue. What is wrong with me? Why can't family help? My heart asks why can't he be minded at home? The odd person who sees him says he is grand.

I stayed a night with my sister and it was good. I cleared my head..... I thought....

Am on my own today, rattling around the house and falling asleep.

Aisling

Follow 6our head not your heart. Only that way will you be able to do the best for both of you.

 

[LadyA]

Me again

During these days of Respite, the demons are back again. Sorry. My brain knows T needs full time care or care that I am not able to continue. What is wrong with me? Why can't family help? My heart asks why can't he be minded at home? The odd person who sees him says he is grand.

I stayed a night with my sister and it was good. I cleared my head..... I thought....

Am on my own today, rattling around the house and falling asleep.

Aisling

Yes. And those on here who have been with me through the years and over the time I was at the stage you are at, and then when William finally went into full time care will probably remember, I was much the same. "Maybe, if I got more help. " (but I couldn't get more help). "But he's so well right now, in respite, surely we can manage for another while." (yes, he was great - in respite, in the nursing home! 12 hours at home and we were back to square one.)
Aisling, even if you apply for the Fair Deal now - allowing for processing time I doubt your funding would be available before the end of May or June. Once the funding has been granted, you would then have another six months to take up a place in a nursing home and draw down the funding. That would be heading into next November or December, if you felt you could manage until then. If you don't take up the funding within six months, you have to apply again.
It's just to think about. Even if you start the process, it's still your decision - and you will still have lots of time. xx

 

[MAMMYGRANNY]

Aisling,
Just to let you know that I'm thinking of you today and to wish you peace this Easter.

 

[Slugsta]

(((Aisling)))

 

[LizK]

After 10 years, I too am in this situation, as Peter suddenly started falling, was unsteady and unable to mount the stairs to bed. This happened within the last 3 days. He's been sleeping on a light put-u-up downstairs, but we only have a cloakroom on the ground floor so hygiene matters are difficult. Regretfully, he will have to go to a NH. I have coped with his incontinence for 6 months but cannot lift a 12/13 stone man on and off the loo. Yesterday, he fell and I couldn't get him up on my own and had to call on neighbours. Today, my body has unexpected pains from the effort I made to get him standing. I'm afraid this is it.
Liz

 

[fizzie]

Aisling LadyA's advice is really great - it means you don't have to act immediately in terms of placing OH but that you have a safety net right there next to you and you have done all the hard work. I know it is different by I had my Ma's name down at a home for many months and just kept moving her name down as she reached the top of the list! In the end she died before we absolutely had to take the place, but it was very close and just having sorted out what I needed to do gave me a great peace of mind.

CJ is right you have been such a great support to OH and such a good friend to so many on here. Thinking of you xxxxxxxx

 

[Aisling]

After 10 years, I too am in this situation, as Peter suddenly started falling, was unsteady and unable to mount the stairs to bed. This happened within the last 3 days. He's been sleeping on a light put-u-up downstairs, but we only have a cloakroom on the ground floor so hygiene matters are difficult. Regretfully, he will have to go to a NH. I have coped with his incontinence for 6 months but cannot lift a 12/13 stone man on and off the loo. Yesterday, he fell and I couldn't get him up on my own and had to call on neighbours. Today, my body has unexpected pains from the effort I made to get him standing. I'm afraid this is it.
Liz

Am so sorry love. I know how you feel.

Aisling

 

[LadyA]

Well, I know the timescale from the sending in the application to when they actually release the funding can vary here, depending on the budget and available funds. Sometimes it can be around ten weeks. I applied at the beginning of April 2014, and the funding for William was finally (after a lengthy battle) released in the middle of September - 5 1/2 MONTHS later.

 

[Aisling]

Aisling LadyA's advice is really great - it means you don't have to act immediately in terms of placing OH but that you have a safety net right there next to you and you have done all the hard work. I know it is different by I had my Ma's name down at a home for many months and just kept moving her name down as she reached the top of the list! In the end she died before we absolutely had to take the place, but it was very close and just having sorted out what I needed to do gave me a great peace of mind.

CJ is right you have been such a great support to OH and such a good friend to so many on here. Thinking of you xxxxxxxx

Thank you Fizzie. It must have been awful for me. You are correct. I have been given a safety net. Many people have never been given this and I must be grateful and have courage now.

Aisling

 

[Aisling]

Nursing home

Hi everyone,

Am trying to be brief in this post. 2 problems in NH while T in respite. A row over specs and shoes with other residents. Staff great. Psychiatrist concerned about behaviour and has taken him off tablets that worked. So T is back now, getting little sleep, agitated etc. staff agree that former tabs were better but psy wants to treat behaviour.
He is having another review tomorrow with psy..... And I have to phone for information in early afternoon. Yes I know I should be with T but all happened so quickly. My fault, no excuses.

manager, staff etc don't know how I care for T so long and are hoping to offer emergency respite. Doesn't make me feel any better. Am good at giving help and advice.... Now need to give it to myself....

Aisling

 

[canary]

Hi everyone,

Am trying to be brief in this post. 2 problems in NH while T in respite. A row over specs and shoes with other residents. Staff great. Psychiatrist concerned about behaviour and has taken him off tablets that worked. So T is back now, getting little sleep, agitated etc. staff agree that former tabs were better but psy wants to treat behaviour.
He is having another review tomorrow with psy..... And I have to phone for information in early afternoon. Yes I know I should be with T but all happened so quickly. My fault, no excuses.

manager, staff etc don't know how I care for T so long and are hoping to offer emergency respite. Doesn't make me feel any better. Am good at giving help and advice.... Now need to give it to myself....

Aisling

(((hugs))) Aisling

 

[Aisling]

(((hugs))) Aisling

Thank you.

Aisling xxxx

 

[Aisling]

Nursing homes

I don't know where I am at present. Just want to say thank you for all the support you have given to me.

Aisling

 

[jaymor]

Just hang on in there Aisling, rest as much as you can and take good care of yourself.

 

[Ellaroo]

Try not to be so hard on yourself. Dementia is such a cruel disease .
Make enquiries re care at home and look up care homes on line , possibly have a look around some .
Take your time , follow your instinct .
Each stage isnt for ever, but each stage lresents different challenges .
Sending big hugs xxxxxxx