My husband requires long term care after suffering a massive stroke 5 months ago. Medicare has cut us off which was expected. My poor husband cannot make rational financial decisions and we do have to pay for nursing care. He complained to one of his brothers which created a cascade of suspicion and doubt that I'm trying to "take his money". He suffers from delirium associated with stroke and is easily rattled. They choose to believe he's mentally acute and can make his own decisions. I've arranged for our elder care attorney to meet with us at the current facility to try and explain things to my husband. He told me he'd rather stay as he is than pursue any further care to save money. But he's not thinking rationally. Has anyone else been through this with a family member? If so, how did you handle it?
90% of the question here have to do with parents. Spouses are an entire different story. The system is stacked against you. The system wants all your money but in the end you need to survive as well. You can spend a lifetime saving for the future and a sick spouse wipe everything out. Personally I tried to care for my wife at home as long as possible. I gave up my business so I could care for her. It was a substantial financial drain but it could have been worse. True caring families can ease the financial burden.
This is a very difficult time, adjustment for both you and your DH, accepting limitations is not easy and “rising to the occasion” is very common, we all do it (we call it show-timing with dementia patient's) so it takes family who aren’t around day in and day out to see the times their LO isn’t “rising” a much longer time to grasp the changes and of course denial is a powerful thing. It’s not fair to add that burden on the main caregiver (you) but it’s one of the things we really have no choice in, I looked at it as a privilege that Mom didn’t mask her decline with me the way she did with her siblings and my youngest brother who weren’t around as much but called regularly. She didn’t want them visiting either because it was so exhausting for her to hold it together and be the person she wanted to be for them. Frustrating and unfair as it is try to give your BIL a little more rope, he doesn’t grasp the situation the way you do, he isn’t the one caring for his brother and his brother is probably able to maintain the appearance of capability with him so he is able to believe that his brother is more capable than he is. Bring him into the fold, if you will and let the doctors explain the situation and options to him. If that isn’t helpful ask him to come stay and care for his brother (visiting daily as I assume you are doing) so you can go visit (insert family or whatever). Maybe that will help him experience the reality of the situation.
Sorry to hear that outside family is contributing to your stress. You and your husband only need to be concerned with the advice of the elder care attorney. It seems as if you have had one for a while so that is one step in the right direction.
Your BIL can butt out because it is your money as much as your husbands. You need to protect your future as well as your husbands immediate care. I know it is better said than done but turn a deaf ear on any outside comments from those that do not have any right to an opinion or judgement. It may get overwhelming with the amount of work that needs to be completed. Take things one step at a time and make sure your POA, living will and any medical directives are updated also. You also need to take care of yourself as well as your husband.
I have found that both Parkinson's and Dementia have a wide spectrum that any given period of time in the day a person can appear very normal and that period seems to happen when family is around! However, it seems that the period of time he is at his worst is when strangers are around and I feel embarrassed for him because I know that is not truly my husband either. I am sure I am exaggerating but In his case I do not call it showtimers because I see all levels even when we are alone, it is simply a fact of the disease progressions.
Look for our will and see if there is a "springing POA" in it that designates you to manage things as POA for hubby.
You should see an elder law attorney. With need for long term care a division of finances may be necessary so that you don't spend his half of your assets and your OWN. If you need the help of a fiduciary they can help you find one. If you need temporary guardianship they can assign that.
As to the opinions of other family members tell them to stay out of your affairs as you manage this illness for your husband.
Do get help. I am so very sorry.
It is your money as well and you are going to pay for his care.
You cannot help it if people like BIL are in denial about his brother’s needs.
You don’t have to explain yourself.
2) DH may have complained about the cost of the nursing care, because we all know that the cost of care can be quite staggering. That’s not the same as suggesting that you are “trying to take his money". You aren’t getting his money, if it’s going to a care facility. It’s a good idea to have the details to make the finances quite clear. For example, you might open a new bank account for payments for his care, so that all 'his' transactions are in one place. That makes it easier to keep the accounts and receipts straight. Then you transfer money from your joint account (or from his account if you have already split your finances) to top up his ‘care’ account, and your joint account shows normal household and personal expenses..
3) Posters with difficult family members are justified in taking the line that ‘it’s none of their business’, but in many cases it makes sense to explain and avoid doubts, suspicion and bad feeling. Can you encourage the brothers to spend enough time with him to understand that he is no longer “mentally acute and can make his own decisions”? Phone calls are not enough. Perhaps find a summary of the simple tests that are given, and suggest that they go through them with him to check it out for themselves, if they don’t believe you. If necessary, explain ‘showtiming’ to them – that many people can get things together for a short time to seem quite OK, but it’s a big strain for them. If they are there longer, the ‘showtime’ will collapse.
4) PLEASE follow the advice to ‘split your finances’. This will impoverish you permanently if you don’t.
Yours sincerely, Margaret
Otherwise it could appear that this BIL is a 'know-it-all' who thinks HE knows better that everyone..
I've met them before..
The Mr/Ms Big Heads who know better. Know better than any Doctor about diseases or medications. Sometimes make their own diagnosis too.
Know better than nurses when & how to care for the patient.
Know better that a person is *all there* based on a short phone call.
Know better that if a person WANTS to stay in their home this means they CAN - despite the care burden being too high for the spouse/household members.
A big trumpet.
Puffed up with their own air & noise..
But not taking the time to read the music & understand what the band is doing.
Is this man a caring brother? One you can talk honestly with & explain?
Or an ignorant trumpet?