Why is there so much stigma around 'putting them in a home'?

[Sittingontheporch]

Hi, I'm a frequent botherer of this board, but have changed username so I can be free with details and not worry about outing myself. And because the subject is one that makes me itchy with shame and fear of judgment, which is kind of the point of my query.

I feel there's so stigma and taboo around an elderly parent going into a home, an implied failure or dereliction of duty from the children. Phrases like 'never put me in a home', or 'they put her in a home', or 'I'd never let my parent go into a home'. As if it's akin to prison rather than being a measured shared decision around a situation.

Or am I paranoid?

Our situation is that my mother has advanced dementia and low-to-no mobility. She lives in a four-bedroom house about two hours drive from me and my brother (and an ocean away from my other sibling). She has always said that she wanted to move into a care home nearer to the two of us. Then when my father died, she said she wanted to stay in the house for a year with the full-time live-in carer that we had employed for him (it went up to two in his last months). It's now six months on and we've reached a crossroads. The house needs urgent adaptations to make it safe, plus a whole load of other things doing as it's falling apart. She says she wants to move and is even excited about it, but I don't know if she fully understands how much space, familiarity and her possessions she'll be giving up.

The three of us are agonising over the decision in rotation, especially the one who lives abroad. We've also had lots of 'helpful' suggestions from her friends, some of whom have told us that they're very upset by the move. Things like 'have you thought of moving her downstairs', 'have you thought of moving closer to her' etc, etc.

I think they're projecting as they wouldn't want to go into a home, but they're currently fit and well.

I just wish it didn't feel as if society judges it so negatively.

We’re on the run to MIL being ‘put into a home’ as we are struggling to contain the care she needs. I wish we could do more but we can’t, we just can’t, she needs specialist care now and even FIL has accepted he (we) can no longer do a good enough job at home. I don’t care what anyone else thinks. Unless they want to step in and help they can shut up and take a walk.

I have a friend here in Ireland. Over the past 10 years she has seen several people dealing with parents and their care. She has seen the effects this has had on her friends life, health and their own family time. My friend said the reality is that years ago people may have cared for elderly parents but the parents died at a younger age. Now people can live longer due to a better diet and medication. They can live longer but not always with a quality of life.

I have also seen elderly parents who refused to do certain things like regular doctors visits, lose weight, get eye tests or hearing tests or deal with health issues before they get worse.
Then they refuse to move from big family homes with gardens that you need to have a car for transport because they are miles away from a shop or town.

The reality is that some people have health issues or need support/care to live as they get older. Their families can't drop all and do this because they have jobs and their own families to look after.
They need a nursing home. Unless someone has looked after a person in their 80's or 90's that gone like a toddler due to altizmers they have no right to tell an adult son or daughter what they can do to look after a parent or parents at home.

OP here, thanks for all the thoughts, it's been really useful for me.

Update is that DM is moving at the end of May to a home and her house is being put on the market. I don't know that she understands that this is irreversible or what she's losing, but it's happening. I'm dreading it all as well as feeling befuddled by all the practical things that have to be done (labelling clothes, arggh). It's like a depressing version of dropping kids off at university.

I think that some people she knows are judgmental - we've had some comments. But the people who really know her and her situation have said they feel we're doing the right thing.

I just hope it's OK in the home and that she can adjust. She will inevitably decline, she is declining fairly rapidly, so we have to remind ourselves that it's not solely as a result of having moved her.

Glad you've reached a decision OP.
You're right. People will judge. But they are not you, or your Mum so their opinion counts for little, and one day they may see that.
Unfortunately you are also right that your Mum will decline, and yes, the move may be a contributory factor, but that still doesn't mean it's the wrong decision. There is no real answer to situations like these. Whatever we do has pros and cons. You are right to keep sight of the fact that sadly your Mum is declining, that decline is irreversible and is going to continue wherever she is. It's also worth bearing in mind that if her decline does accelerate in the home, you don't actually know that it is direct cause and effect. Things could have been the same or even worse if she'd stayed at home, you really can't know. And staying at home brings other risks too. I don't believe many people opt for residential care for family members because it's the easy option. It's usually because it's become the least bad option and the potential for a "good" outcome has long passed. The people who claim they'd never do it are usually those who have fortunately never had to face this type of situation.

You're absolutely right about it being the 'least bad option' - it really feels like there are no positive choices in this situation. And that we have no way of knowing what will cause her to decline further. I just saw an old friend whose mother was only in a care home for 40 days before dying - she still feels it was the right decision.

Also wanted to add in response to the poster saying that she and her sisters wanted to keep their mother in her own home for as possible. With dementia this isn't necessarily the best idea even if it is possible. The consultant and the GP told me that it would be better to move my mother while she still had the capacity to form new memories.

@Sittingontheporch I find the best approach is to judge the people who are judging for being judgey.

You can outsource the clothes labelling - my very elderly relative the home does it as clothes arrive (home not local so clothes ordered online and sent to the home rather than someone dropping off). Home then adds the cost of labelling to monthly bill. Works well as they use their preferred format which they know works for their laundry.

And there's usually someone locally on things like FB who will put labels on for x amount. They often advertise before the beginning of the school year.

Make things as easy as possible for yourself!

Thanks, that's a good tip. I'm finding it hard to work out how to do things and in what order. I'm not finding the care home to be very responsive (bad sign but hey ho) as would love a really good countdown/checklist to help guide me through it.

“The other mantra I found helpful was something a priest once said to me: that everyone in these situations has ‘equal rights’ . Your DM deserves care and consideration, but not more than your children, your husband , even yourself. Of course, you may choose to sacrifice your own share, but you don’t really have the right to sacrifice the needs of the other people in your life. My own mother would ‘I’ve had my life. You haven’t ‘.”

This is really wise

Someone recently told me of their FIL, mid 70s and only remaining child is caring daily for his mother who is over 100 now and living alone. Since his retirement 10 yrs ago he has spent his entire life doing this because she keeps reminding him that he can never put her in a home. It made me think how utterly selfish some people are. My worst scenario would be ruining my kids lives and having them resent me.