Best decision to make a) stay b) move c)?

[Confused Kat]

Hi all - Long story short.
My father (87.5yrs) is doing amazingly well in some respects. Diagnosed 8yrs ago, needs lot of help, late stages for sure but still mobile, slowing but slower than we thought. His constitution is amazing but he cannot be left alone and needs help with all daily tasks, dressing, prompting to eat - forgets to eat mid-meal. My husband is worried that mother won't be able to support him upstairs and could leave taps running (however he sleeps most of the time and is never unsupervised in the bathroom etc)

My mother (85.6yrs) main carer has a rare muscle condition (myositis) and is likely to be in a wheelchair in next 4-10mnths. We have care in most days and will look to increase.

They hoped they would be able to remain in their home as long as possible but soon the upstairs might be off-limits for mother (we have a stair lift but she is starting to struggle to get off seats) so we either need to help them a) stay where they are and make a few home adaptations b) move to a new home (very stressful and they are reluctant to do) c) something else??

My worry is that this is a huge upheaval at this late stage in their lives. We did discuss it a couple of years ago but my mother thought things wouldn't play out as is and didn't want to move - she loves her home. My husband and I would totally have them live with us - we have no chd and work from home) we have downstairs that would accommodate (pending bit of DIY which we need to do and will fund ourselves). I know many view this as not the best idea but we know how challenging it is to sell and find the next house due to chains etc.

Any advice welcomed - sleepless nights here to help them be happy as can be and together in their final months-years.

 

[DeeCee7]

Hello @Confused Kat I can imagine your sleepless nights, it’s such a worry isn’t it, knowing what’s best to do. I think from reading of other posters experiences on here, having them come to live with you is not sustainable. You would come to regret this as the care burden intensified and became intolerable, and you would still have to make decisions then. I think the “something else” you allude to is a care home of some sort. Have you looked into this yet? There are many where both husband and wife move in together and their varying needs can then be met. Some share a room, and others are in the same building so they see each other during the day, but one is in the “ residential” side and the other the dementia care side. It’s worth investigation and good luck with your decision.

 

[Confused Kat]

Thanks so much @DeeCee7 - the move to us would only be temporary for sure whilst they got sorted - but realise a huge stress for that too - and agree would only be in an emergency.
I am currently looking into assisted living flats/bungalows and care homes (the ones near us are not very nice though) and after going through all of it with my dad less than a year ago - still bear some scares of nursing homes - albeit in different geographical area.
Thanks for taking time to reply - appreciated.

 

[Grannie G]

Welcome @Confused Kat

Any move at this stage will be disruptive for your parents and if you possibly can, I would suggest the next move to be as permanent as it can be.

Assisted living accommodation would be very short lived because it sounds like your parents need more care than can be provided.

My rule of thumb is to calculate the hours people who have care packages are left alone.

It does sound as if your parents are at risk and need 24 hour care. Whether this is with you or in a care home is a problem. I`m not surprised you are having sleepless nights.

Good luck.

 

[Dunroamin]

Agree with @Grannie G . Assisted living care packages will still leave people unattended for long periods of time and they only do what you pay for. If your mother has Myositis then I respectfully point out she should not be caring for anyone else. She has her own health needs (you state that your husband is concerned she may not be able to provide support "upstairs."

Moving home at this age regardless of medical concerns is a huge problem for many and raises many issues.

Selling a house - yes it is stressful, but you are looking more at your own needs and time constraints on this - and not in the best interest of those who need help and support.

Working from home is OK but you have a responsibility to whoever employs you , or to clients if self employed.

How do i know all this? WE have made such a move 6 months ago. Selling/buying process was protracted and at times frustrating. But we can say with 100% certainty that the move has been of great benefit both support wise, socially as well as cathartic. Support and care is available to us 24/7, we have outings, socials, concerts, and we are in the 'middle of things'.

Please do not isolate your parents whilst you are working from home.

 

[Confused Kat]

Many thanks Grannie G - yes we want to minimise moves and get it right for sure. Mental well being for them just as important for sure.
So hard - no crystal ball!
Thanks for taking time to reply - really helps.

 

[Sarasa]

I too think a care home is the best option, even if it is one that is a little further away than you'd like. My mother's first care home had several couples and they often set up one room as bedroom for them and another as a sitting room. The place also had different floors, and quite a few residents that had medical needs rather than dementia. There was also a lot of activities on for all the residents.

 

[Confused Kat]

Agree with @Grannie G . Assisted living care packages will still leave people unattended for long periods of time and they only do what you pay for. If your mother has Myositis then I respectfully point out she should not be caring for anyone else. She has her own health needs (you state that your husband is concerned she may not be able to provide support "upstairs."

Moving home at this age regardless of medical concerns is a huge problem for many and raises many issues.

Selling a house - yes it is stressful, but you are looking more at your own needs and time constraints on this - and not in the best interest of those who need help and support.

Working from home is OK but you have a responsibility to whoever employs you , or to clients if self employed.

How do i know all this? WE have made such a move 6 months ago. Selling/buying process was protracted and at times frustrating. But we can say with 100% certainty that the move has been of great benefit both support wise, socially as well as cathartic. Support and care is available to us 24/7, we have outings, socials, concerts, and we are in the 'middle of things'.

Please do not isolate your parents whilst you are working from home.

I feel you might have misinterpreted my post - none of this is about me or my husband - my mother wants to stay in her own home and as independently as possible - she doesn't want to move and currently lives in her own home. Glad your move worked out for you - everyone is different. We are not at all thinking of our needs. She has capacity to choose after all.

 

[Collywobbles]

I feel you might have misinterpreted my post - none of this is about me or my husband - my mother wants to stay in her own home and as independently as possible - she doesn't want to move and currently lives in her own home. Glad your move worked out for you - everyone is different. We are not at all thinking of our needs. She has capacity to choose after all.

I think this is a crucial point - you *aren’t* thinking about yourselves, you’re understandably focused on your parents’ wishes and needs. But from other folks’ experience, you are a critical factor in the current decision process - maybe you ought to give yourselves grace and factor yourselves in?

From the things you’ve told us, regardless of what your parents - and you - might wish for, you seem to be approaching the point where decisions have to be based more around what they actually need, and what is sustainable for you and your hubby.

Wishing you all the best.

 

[Dunroamin]

@Collywobbles - yes and this is what I was trying to say.

@Confused Kat - apologies if my post upset you. I do not think my reply was misinterpretation. I was merely trying to help noting the following red flags:

. father @87 years in later stages of Alzheimers - cannot be left alone
. mother 86 with a degenerative condition and may be wheelchair bound in near future
. stair lift posing a potential for catastrophic injury

I also note your comments about 'having capacity to choose' and your mothers reluctance to make changes,

I have alzheimer's (diagnosed 2019) and also have the capacity to choose. at the moment I am also a retired medic. which influences many of my life decisions at the moment due to experience(s). Our decision to move (not what I wanted) was made on what we both NEED, not what we both WANT. @Collywobbles put this more succinctly than I.

Whilst you are central to the decision making process - it should be that of advocate - not controller.

Best wishes.

 

[Confused Kat]

Totally understandable - so hard isn't it! We are getting there and making a plan - best of luck to you - life is tough! I really appreciate the time you have taken to reply, it means a lot!

@Collywobbles - yes and this is what I was trying to say.

@Confused Kat - apologies if my post upset you. I do not think my reply was misinterpretation. I was merely trying to help noting the following red flags:

. father @87 years in later stages of Alzheimers - cannot be left alone
. mother 86 with a degenerative condition and may be wheelchair bound in near future
. stair lift posing a potential for catastrophic injury

I also note your comments about 'having capacity to choose' and your mothers reluctance to make changes,

I have alzheimer's (diagnosed 2019) and also have the capacity to choose. at the moment I am also a retired medic. which influences many of my life decisions at the moment due to experience(s). Our decision to move (not what I wanted) was made on what we both NEED, not what we both WANT. @Collywobbles put this more succinctly than I.

Whilst you are central to the decision making process - it should be that of advocate - not controller.

Best wishes.