Advancing dementia, caring for a loved one, care homes and the opinions of others.

The most expensive one of the eleven I viewed was a Bupa home and it stank of urine.

If you do go down the route of care home care , then please install cameras in your mother's room and do not tell the carers or care manager that the camera is there. And yes you can legally do this before the load of shit talkers come along staying you cant .

I inspect care homes and know exactly what you mean! The all singing and dancing ones dont always match up to expectations.

The home my DM went to had worn carpets, mismatched tablecloths and desperately needed redecorating - things that would probably put a lot of people off. But the warmth and welcome from the staff - both to DM and to us as a family outweighed any sparkling whistles and bells.

I inspect care homes and know exactly what you mean! The all singing and dancing ones dont always match up to expectations.

I started caring for my DM who had severe osteoarthritis after my DF died. They lived in our granny annex so I'm aware I had it easier than many others. Dementia is so insidious it can be hard to realise that a loved one has it.

As happens in so many cases a crisis (suspected stroke picked up by a carer who hadn't seen her for a week) leading to a hospital admission. Thanks to coaching from a friend who had cared for several elderly relatives my DH spoke to the hospital and said that we were no longer able to give personal care and would no longer be able to fill in the gaps between care visits.

A week or so later a lovely OT told me very gently that she thought DM had dementia and she didn't think she could be cared for at home. She transferred from the hospital to a rehab facility where she was given a social worker and together with the discharge sister we agreed that she should be receive 24 hour care. I turned down the first place she was offered - I had heard nothing but bad things about it - and eventually she was offered the place where she spent her last two and a half years.

They went above and beyond to make her happy even though she was unaware of what was going on. We felt that it was her home, not an institution. Shortly before DM died my uncle who had visited her weekly since she moved in died suddenly. The staff, residents and other visitors knew him well and cried with us and supported us.

There are some homes that are hell holes but there are others that are warm and loving. Be kind to yourself.

@Freeasabreeze Look for a nursing rather than a care home if she has complex needs. My DF is on the dementia unit within his nursing home. The staff all have specialist training and although he's been there less than a week, they already understand his physical and verbal cues when he's communicating with them.

I found the CQC website a good resource, then I spoke to people I knew. I also used lottie.org to give me a shortlist of suitable homes and cross checked it with the CQC.

I'm looking forward to being a daughter again rather than a carer now.

My DM is in nursing home, my sibling and I kept her at home as long as we could. My sibling was more keen than me to keep her at home. Looking back at those years I neglected my DC, my DH and my own health and wellbeing. My DM’s quality of life is so much higher than the one my sibling and I could give her.
You have to do what is right for you and your own family unit. Who cares what someone on social media or IRL says, they haven’t walked in your shoes?
Now I visit her twice a week, sadly she doesn’t know who I am anymore but it’s still nice to be a visitor, listen to music with her and tidy her clothes etc.

My mum had dementia and we muddled along then she had a stroke and literally overnight she couldn’t walk, stand, weight bear at all and was doubly incontinent. She was in hospital for 3 months and then as she needed more care than I alone could give her ( I’m an only child) she had to go into a home.
If you have to make this difficult decision , you visit loads. I think I visited 12. You see if anyone you know can give a personal recommendation. One or two was a hell no from more or less walking in the door. In one I was talking to the matron and a carer came out into reception through a door that led to a bathroom leaving a lady sitting on the toilet in full view.
Another hell no. One had a cinema and gave wine with dinner. My mum was passed watching tv by then and was tea total. It turned out that this particular home was all “ fur coat and no knickers “ looked glossy but the caring standard was very poor.
the one I ended up choosing was not the smartest, or the most up to date. It was spotlessly clean. It had staff who had been there for years ( very rare) and the care was great. All nurses had been trained by the local St Christopher’s hospice on end of life care. Mum was there 2 years and died there peacefully. Good care homes do exist.

8 years is way too long to be doing this, OP. Of course a care home is the best option - both for the patient and their family. In fact, especially for the patient, so I wouldn't think twice. Get on the phone to Social Services tomorrow, and start the ball rolling.
And, ultimately, it doesn't matter what other people think, because they know f*ck all about it. You do what is best for you, as we all do.

In my experience the most critical people never roll their sleeves up and help with any of the heavy work involved in caring. They rarely visit care homes either
I had no doubts about using a care home for my mum and MIL. The care staff could do all the caring much better than I could and had the correct equipment to do the heavy lifting.
That left time for me to have quality time with relatives that were clean, well fed and comfortable.
My relatives would have approved of my decision I know.

Anyone that moans at you is very welcome to come do a shift at dealing with double incontinence and constant repetition.

We "put" Mil in a home when she started falling and Fil couldn't cope anymore. He asked us to find somewhere, so we did and it's been so much easier for everyone.

Picking their loved one up out of shit is not something anyone really envisages when they say they'll care for their beloved mum. It's not heart and roses.

Oh @Freeasabreeze it's a tough one isn't it? I looked after my DF single handed for six years as his live-in carer. In December he had a series of falls in which we were both injured. He went into respite whilst we both recovered.

Despite having been in this home before for respite, this time it wasn't working well and my anxiety was awful. I contemplated him coming home with a 24 hour care package, but his needs are too great and the house is unsuitable.

I was very fortunate to receive a phone call from a nursing home I had visited in August last year. I'd put him on their waiting list just in case and he was now first in line.

I moved him last week. It is an amazing place. It has a CQC outstanding rating and all the relatives I have spoken to rave about it. He is now cosseted and properly cared for with nurses available 24 hours a day. My anxiety has gone and I am sleeping through the night for the first time since 2020.

I've been where you are. I was happy to care for my DF. It was a privilege, it still is, I just don't do it hands on anymore. I don't feel guilty about this decision at all. Dementia is an appalling disease, it affects the whole family. Don't let it destroy you.

For all those people who are critical there are probably double who have parents in care homes and never visit them!

It is exhausting and I'd never criticise anyone that, when needs get too much that their loved one goes into a care home. They have 24/7 care and all the equipment, cooks, domestics, nurses that your parents needs. The argument of 'well they cared for you'...yes they did but you were progressing, developing and growing. There was positive change. With dementia it's in reverse and that's incredibly difficult to see.

A lot of care homes are good nowadays, some are excellent. They're not the institutions of years gone by.

Most people who do all the guilt tripping stuff have never been at the sharp end of dementia care. Ignore them and do what is best for all parties, including yourself.

I can guarantee that most of the people telling you to sacrifice yourself haven't done it themselves, particularly for such a long time for someone with advanced dementia.

My grandmother, my father and my aunt all went into care homes and thrived on the additional levels of social contact and stimulation - and later my dad needed care equipment that simply wouldn't have been feasible at home.

Sometimes family care at home is absolutely the right thing - it was for my stepdad - but very often a well-chosen care home can be as good or better. For the person being cared for as well as the ones doing the caring.

Only you know what's best for your family situation.

Well it all sounds very fine and noble for these people pontificating about what you should do, but this is an incredibly hard path to walk and you need to find your own way through it. People may have historically cared for loved ones at home but not usually for the extended number of years that dementia takes to play itself out, while being expected to work full time until age 67 themselves.

I hope you find a good setting for your mum and I'm sorry you're dealing with this, it's very hard.

@Freeasabreeze firstly you sound like you have done an amazing job. Secondly it is absolutely no body else’s business what you and your family decide to do in order to meet the needs your Mum now has. Absolutely nobody has the right to guilt trip you.

We are a generation with elderly parents living existing so much longer.

Choose guilt over resentment every time. As for people talking about nursing homes - which is probably the type of facility you need to look at - being ‘hell holes’ that is simply hyperbole. It is also incredibly insulting to the many staff who work tirelessly caring for the elderly. I am in awe of the staff at the facility my DF has been in for 3 years now. He NEEDS to be there. It is that simple.

Do join us over at https://www.mumsnet.com/talk/elderly_parents/5474948-cockroach-cafe-spring-in-autumn?page=22

It is a brilliant and safe space to vent and share our stories. 💐

Unless people have actually done it for years they shouldn't comment. I've been caring for DH (not dementia) for three years and it's so hard. Looking at respite care soon so I can have a proper break. I am so sorry to hear how cruel random people can be. Huge hug from me .

It absolutely is not a failing to have to look at a care setting for a parent (or anyone). Caring is such a difficult role & with the best will in the world, we can’t necessarily meet the person’s needs all of the time. Absolutely consider 24 hour care in a nursing home setting. It’s not failing, it’s looking after yourself and the person.