Not missing anything
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
My heart goes out to you Aisling.
My parents are both living at home, both have Alzheimer's and we receive care from SS though this has not been straightforward and the catalyst to receiving the care that they do was an incident with a live in carer (whilst I was away as although I don't live with them, I needed this in place for piece of mind as I live near by and am on hand as needed). Dad hit the carer and so we are on the radar with SS as it were.
My hope is to keep M&D supported at home for as long as possible because at the current time I believe this is the best solution, but I also recognise a time may come when this is not viable. The moment they move into a home they would become totally self funding (at the moment they pay towards SS care based on the fact they have savings about a certain threshold), which seems ridiculous. That said, if that becomes the best solution then that is what we will do - I don't think you should worry yourself about any inheritance as this shouldn't ever be expected - at the end of the day it's about getting the right provision for your OH and you, and using funds you have if that is needed. I don't think you should feel any shame either if you feel CH/NH is the right option.
In the meantime though I would fight for getting the services and provision you need, at home if that is the right place, and my understanding is that SS should work with you provide that level of care. When we initially put a care plan in place it was thru an external provider as SS were unable to resource. That subsequently changed as in house resource became available. I do sometimes feel I am a lone voice (my sibling has differing views) although SS have been generally supportive. The skills I think you need are self belief, determination and fighting your corner, but I'm guessing you already have those as do all the other Carers doing a brilliant job on behalf of their families.
Edit to post.........I just realised I was replying to your early post and not most recent comments...sorry. I have read that the situation has moved on. So I hope all is well currently.
All the best.
G x