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Parkinson's Movement
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What happens next

Hello all,

I start then stop worrying about what the future holds? and i am in worryimg mode again. My husband is the pwp and into his 6th year, he seems to do ok but some days he seems to throw in the towel.

I try my best to keep him positive, depression seems to get him badly sometimes, and he requlary falls out of bed.

His specialist keeps asking regarding his memory, and seeing things that are not there, although his memory is failing, isnt all our memories failing due to aging?

My main worry apart from my husbands health of course is what will happen if things get out of hand for me to care, its a very scary feeling, and then i am told allsorts of different things about the government making you sell your property to pay for care? it worries me sick, and I just hope things never get to be that I cant manage any more.

I spoke to a solicitor to ask if the house could be put in my name to avoid this and i was told NO as they would realise the reason for doing this.

I also care for my husbands brother who is mentally handicapped (he lives with us) I suppose he would just have to go into permanent residential care???

Its so hard, you work hard all your life and whats at the end of it? no give at all just take take take, does any one have the same dreads as me? it would be nice to hear from you.

xxxx

22 Replies
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I'm sorry you have this worry hanging over your head! !st of all, what country do you live in?

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Hi Marion I live In The Uk x

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Government forcing you to sell the house to pay for the care!? I do not get it.

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Hello allofatremor

Please tell us what meds your husband is on. There is a good chance they are making him be depressed at the very least they they could make it worse. C/L ext release makes me have depression and a host of other things ,.

Good luck

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Hi Bailey,

His meds are Stalevo,madapar,amantadine,clonazepam,rasagaline,entraprone,and

Levodopa (excuse spellings) x

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Have his doctor review his meds he in my opinion is is takiing too many and taking too much

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I may be wrong, but I believe you get to keep your house as long a one spouse is living in it. I think the house may have to be sold to pay for care once neither of you live in it.

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That’s what I thought, but it’s not the case I’m afraid x

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Another consideration might be a reverse mortgage so you can get a regular income out of your home, rather than leaving it all to pay health care bills which can add up very quickly.

I met an older gentleman recently who had to put his wife with dementia into a facility and he was telling me that he had to put his house in his daughter's name in order to prevent the equity being used to pay health care bills......a very sad situation!

Art

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I don't think she's in the US. It sounds like the UK where the laws are different.

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Thanks easily, I can’t do anything now as if I change my home to another’s name apparently they will see it’s because of my husbands PD and that I’m trying to avoid the obvious care fees, I just hope it never comes to this x

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My heart goes out to you allofatremor. i guess this is something we should all check out in relation to what our local laws are. I know that I will be, so thank you for a timely reminder.

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That won’t work as they look back on records to make sure it hasn’t been gifted otherwise everyone would do it

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It is all very frightening,, especially if you don't have a lot of money.

My approach to my Pd was to do everything I could to stay healthy. Exercise has been proven to help deal with many of the symptoms of Pd.

I have been able to come off all Pd medication and now live a normal life, even though I still have Pd. It took me 8 years of doing fast walking, every second day, to get to this stage. It may not work for everybody but it is certainly worth looking into.

You may think that your husband could not possibly do fast walking but you would be surprised.

Look at my profile or contact me on my website - reverseparkinsons.net I will help you both to do the fast walking and it will cost you NOTHING!

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Thanks John I will look at your website x

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One option is to get a solicitor to change ownership of the house to joint Tenants in Common. This way you and your husband each own half of the house, so only his half may be used y

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But if the rule is you can keep your family home as it is in NZ owning it 50:50 may be worse as if it is joint you both own it 100% so you would get to keep it.

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to pay care home costs. In that way, the house cannot be sold whilst you are still in it as you can't sell half a house.

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I was going to suggest that myself gandg. I think that is the way to deal with it.

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See above. I think whatever country you are in it is best to see a lawyer for specific advice as early as possible. In New Zealand you can keep your family home and just over$100 k of assets but have to sell all other assets to pay. Gifting and trusts won’t help and neither does changing ownership to the other partner as even if they don’t realise the change was avoidance they consider both partners assets together. The only option I can see is divorce and splitting assets that way. Terrible situation but if he goes into care then all divorce is a piece of paper as you aren’t living together anyway. You can still visit as a friend and you will know it is not for real.

And nobody else needs to know except the government and the lawyer.

One other option is start making smallish gifts each year to children so your equity goes down and fall on their mercy if you need financial help later on. That would only work if you can trust them not to spend it all and to give some back later on if you need it!

Or in NZ the temptation is to borrow as much as you can on the house and spend it all having fun as when your assets run out the government pays for the care anyway so it doesn’t make much difference to the level of care with or without money.

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One thing PD does offer is thinking time. You know that your husband faces the real prospect of being less fit in the future. I guess you have learned about those possible difficulties. House maintenance never stops. Your care role may become harder. However, it could be a long time (if ever) before you need to pay for full time care.

Talk about this together now, and consider whether your present home is suitable for you long term. If not, where do you need to be. Would you be better in a smaller home, without stairs, nearer shops etc, etc. Moving might release some of your savings so you can buy in extras, eg taxis, podiatry, ready meals.

Also, check you take advantage of any local free services eg. dial-up public transport, prescription delivery.

(I moved from family-home to a home-for-2 on retirement, then to an apartment after my PD diagnosis. I found it a relief to face the future in a smaller place with less 'stuff'!)

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Thank you so much for your opinions, they are sound in every way, the thought of a smaller home does appeal and it is certainly under discussion.

I hope you continue to be well and happy in your new home, good luck and god bless, and thanks once again for your solid advice it’s made me feel better already 😘

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