People who give up there lives to care for elderly and unwell parents, just how do they do it?

[Backtothe80splease]

Sorry, long thread but I'm feeling so very guilty.

I am 51 suffering from anxiety, depression, chronic health issues and am in perimenopause so I'm probably being too sensitive but I've been torn to strips on a local FB and have not slept last night because of this.

My parents are in their early 80's. I have always been close to them and they live just around the corner. Until 2018 they had a golden life. They have lots of money, until recently had good health, they were always out and about and loved life.

However, mum was diagnosed with Alzheimer's in 2018 and 6 years on, as expected it is getting worse. She is also bent over with osteoporosis, has a pacemaker and this year was diagnosed with breast cancer (controlled with medication). My poor mum has really taken a battering with her health.

My dad is not a natural born carer and as I only worked part time I have slowly found myself doing more and more for them to the point that I am round 4-5 times per week and at one point I was doing everything. I started a thread a year or two back and upon advice I did step back a bit, we got a lovely carer for mum so she has help showering and getting dressed in the mornings. Dad was very opposed to this originally but now says the carer is a lifeline for him but he still refuses more help in the evenings or at weekends! I also take mum to a day centre two afternoons per week to give dad a break but it's not enough. He is complaining more and more that he is struggling with mum especially as she is starting to have a few (albeit sporadic atm), toilet accidents.

To be honesty, we are all frazzled. Both my sister and I have chronic health issues which have become worse during this time of great stress and dad is very low and although he has always been cantankerous, the stress is making him worse and we often snap at each other. I also have teens at home and a DH. DH and I argue a lot recently as he thinks I do far too much for dad especially as my father is very well off and tight, he often refuses to spend out for things to make their lives easier. He has squirrelled all their money away in investments for a rainy day but he can't see that their raining day has arrived.

Anyhow, dad and I had a conversation the other day after mum had wet herself in the car. He said he can't cope. I have suggested live in care as they have the space and money but he says he does not want people in his home. Fair enough. I don't want to see mum in a home but I am not 83 years old and living with her 24/7. So I have suggested in the new year we look at some local care homes and maybe start with respite and go from there.

I have asked on our cities' FB group for suggestions on good local care homes and I have had lots of great replies. However, I have had a few women tell me that all the homes are awful and they wouldn't put a rat in them. One has gone so far as to bombard my post with comments to me (and others) saying we have no morals by allowing our loved ones to go into care and that she will give up her life and dedicate it to looking after her father when the time comes. She claims to hav decades of caring experience in homes and says they are all dreadful places. She has told me I'm a pathetic creature, that I have no clue and we are all trying to justify our decisions to put Lo's in care.

Tbh, her replies have devastated me. I don't want my mum going into care, it's the last thing I want for my lovely kind, caring mum but how can I override my dad's decisions even with POA, he lives with her. I can not dedicate my time to care for my mum all the time, I'm at rock bottom as it is. I am at my lowest seeing my parents struggle so much, dementia is evil. This woman is making out that I have no compassion for my mum, that I'd just shove her in the first home I come across. That couldn't be further from the truth, I would research and research until I found the right one.

Now my ds girlfriend has said she has worked in a few of the homes and they are indeed all awful.

What on earth do we do? I hate this, it's destroying us all.

I’ve worked in care homes, I don’t think they are awful but not lovely either. People are doing their best in challenging circumstances. The reality is most residents have a fairly miserable existence. Not because they are mistreated but because they are in pain from chronic conditions, confused from dementia/ Alzheimer’s, non- verbal, incontinent, mobility issues etc.

In many ways the care is better in a home than at home as there are multiple staff on hand to help. It’s generally safer, no leaving the oven on. Obviously the staff don’t love your mum the way you do. If the caring was taken care of then you will be able to spend quality time with your mum rather than sorting out chores.

I do think he's reached this stage where it's 'out of sight, out of mind' regarding my mum, he really wants mum in a home moving forward, he doesn't want to have to deal with any of it.

Thing is, while on the surface of it that sounds pretty selfish, he's in his 80s himself. I wouldn't want an adult pissing in my home or car either and I'm the same age as you, but healthy and perfectly able to do it. I just wouldn't WANT to, even if it was my DH doing it!

Caring for someone with dementia is, as you know, utterly soul-destroying and depressing. When we imagine our old age, I'm guessing that most of us imagine taking nice holidays, pottering in the garden, walking, having meals out with friends, reading, enjoying our hobbies, etc. We don't imagine being elderly ourselves and having to care for someone else who is equally elderly, but suffering from a serious illness that makes them difficult, annoying and incontinent!

As you say, your DM's care needs are only going to get greater and if your DF isn't coping now, he will cope with the next stage even less well. It really does sound as if the best solution for all is for your DM to go into a care home, where her needs will be met, her messes cleared up by those who are paid to do so, and your DF can then enjoy his life in peace and quiet and not be clearing up someone else's urine.

@Lovelysummerdays
Obviously the staff don’t love your mum the way you do. If the caring was taken care of then you will be able to spend quality time with your mum rather than sorting out chores.

I think that's really important to remember that the carers and care home don't love your relative because sometimes you need to be a full step away from the patient to make sensible choices and provide the basic and medical needs.

If love was enough, caring would be a doddle. The reality is that being too emotionally involved can get in the way of good care.

Once my relative with dementia was finally taken into care, and a routine established, they were far more settled than they were at home.

There is a lot of bad news about care homes and no they aren't all lovely places. As long as the patients are settled, have their care needs met and the staff are observant, patient, and kind that's all that matters. It's our job to provide the love and whatever they need from home. You will still be on call but it does get easier for carer and cared for.

Your mum being at home may actually be making your dad unsafe. I know someone who took her mum in to live in her home when she was diagnosed with alzheimer's. While hanging out the washing her mum started to run a bath then forgot and flooded the house - mum was sitting where she left her her when she came back in. While she was upstairs stripping the beds her mum decided to make a cup of tea and put a plast electric kettle on the gas hob setting fire to the kitchen. That was after they had put extra bolts on the doors to stop her wandering in the small hours.

You are doing the best for your parents. The Facebook idiots have no idea so do just block them. A live in carer could be an idea for the both of them but do look at the care homes. Visit the care homes and make your own opinion. You could visit your mum regularly. Check on options for your dad as well.

Care homes are awful for someone fit and healthy. They are not necessarily awful for someone losing their faculties.

My father didn’t have dementia but was declining. I got carers for him, I got meals on wheels, did his shopping for him, visited for at least 3 hours 2-3 times a week, printed out tables for him to manage his medications. He stubbornly kept to his routine- get up, breakfast, morning tablets, lunch, tea, evening tablets, bed. But because he wasn’t getting up till 3pm, he wasn’t eating all his meals, and he wasn’t keeping up his tablet regime.

When he finally consented to a care home, he put on 2 stones in weight, the oedema in his legs vanished - he was transformed. Yet all they did was feed him regularly and make sure he took his tablets. He is now 102, frail, confused, but, in his words “I’m warm, I’m comfortable, I’m well fed, I’m happy”

I couldn’t have done that by myself. It’s physically impossible for one person to care for another adult 24 hours a day, 7 days a week, with no sick leave, holidays, or downtime without listening out for a cry for help. Note your critic has no experience of this. All her caring has been done with the guarantee of going home at the end of her shift and switching off completely. Her words were intended for one thing only, to give herself a sense of smug superiority.

I think the sad awful truth is that aging is infantilising and depressing and if you do reach a certain age drains the life out of you to the point where you are just existing.
care homes are going to be potentially miserable places bexause they are where you go at the end of your life and likely need a lot of care and have various ailments

my parents have been through it so we have already talked about it - my Nans both ended up in retirement flats with care attached but not in homes.
The saddest for them was Covid which I think did do an awful lot of harm in the industry that (like other areas) it hasn’t recovered from - maybe something like that would help

*Obviously the staff don’t love your mum the way you do. *That’s not to say they don’t love them. I'm in no doubt there will be several staff who will genuinely mourn my father.

*If the caring was taken care of then you will be able to spend quality time with your mum rather than sorting out chores. *This is the big thing. You will be able to go back to being a daughter.

How awful...so sorry for you all....report the online bullying it's someone being nasty....nobody else is where you are your family need to do what is right for you all.

I worked in a care home for a bit, quite a long time ago when I think they were less regulated than now.

Most staff were great and looked after residents really well. I think that particular home has gone downhill now but you can find out a lot from inspectorate reports. There's also a "Rights for Residents" group on Facebook where you might be able to find local recommendations.

You do get some people who just don't believe they'd ever put relatives in a home but also some of the families in the home where I worked had had multiple relatives having breakdowns with the stress of looking after older people.

It was easier to do a job then check out than have care responsibilities all of the time, and I point blank refused to do personal care for my Dad because I knew what it was going to be like.

Also, I think most people on this board have started off by accepting elderly relatives boundaries as somehow overriding everything else (don't want a cleaner, don't want to go to a home, don't want a home help) but then gotten to the point sooner or later that their own boundaries are just as valid (want to spend time with family, don't want to get burned out with stress, need some time off).

We are reaching this stage regardless of whether my father wants to acknowledge it or not and we (I) simply can not continue without major changes.

As you say, neither my sister or I can be on standby 24/7, neither do I want to and dad is simply not meeting mums care needs right now and certainly won't be able to going forward without some big changes. If he won't except that change within their home then mum is going to have to go into care.

I just can not do this anymore. I'm spent.

My MIL had Alzheimer's and IMO would have been far happier in a home. Especially one that is near us which catered for dementia patients and ran all sorts of hobbies and activities like art, cooking, gardening etc.

MIL wouldn't cooperate - wouldn't come and live with us, couldn't manage on her own but hated carers going in. I used to go over and find her just sitting staring into space. God knows how much time she spent doing that.

And still yet another government is not going to look at improving adult social care.

Exactly, I don't need carers to love my mum, that's a job my dad's, sister's and myself but as long as she is being respectfully cared for and lives out the rest of her life in relative comfort, well that's all we need.

I find it interesting that the theory for young adults with disabilities is that they are entitled not only to safety, food and warmth, but also social activities and friendship (I know it doesn't necessarily work out in practice). But for older adults, sitting in a room with a commode with no human interaction apart from 15min carer visits is regarded as a good solution.

@Backtothe80splease you are forgetting the first rule of the internet.

never believe anything people tell you ! I could tell you I'm a carer, a wildlife photographer, a fitness instructor, anything.
I also note this woman hasn't actually done any parental caring, just assumes she will. Being a paid carer is very different from being an unpaid family carer because you get no reward and it's rather more difficult to walk away when your times up.

Enraged on your behalf by that awful womans comments.

I'm caring for my DH, we were fortunate to be in a position where I could give up work and no dependents, he also doesn't have dementia. Most importantly this is my choice (which doesn't make it any easier some days)

It seems clear your Dad is not going to be able to deal with it safely for both of them and accept enough help for you to be able to step back. It's better to know this now and make proper plans for residential care before a crisis is reached, as it gives much more choice.

Please ignore stupid comments in future, the person upthread who said it is never those with hands on experience who make them is right

Sometimes going into a care home is the best option. That was the case for my stepmother, who had dementia, diabetes and was blind. None of her children or his lived close enough to help with daily care. My father kept her at home as long as he could but had to agree to let her go into a home when they were both in their mid 80s and his own health started failing.

It was a lovely family-run home and she was much better looked after there than she had been at home.

My husband's mother also ended her days in a care home in her 90s. My husband was her only child and we didn't live close enough to provide practical help. Again, she was happy and well looked after and we only wished that she had gone there sooner when she would have been fitter and better able to join in with all the various outings that they organised.

There are some lovely homes out there - and in our experience they are not necessarily the most expensive ones.

Don't allow yourself to be bullied or shamed into providing care that you are not able to provide, especially as you obviously have your own health concerns.

We do not as a society have the resources to care for the ever-increasing numbers of ever increasingly frail elderly people.
The reason that women get lumbered is that it's easier to manipulate them into doing the work, easier to make them feel guilty etc.
We have to stand up for ourselves, stop obeying and deferring to men and get in first, we have to say we can't cope, we cannot and we will not do it. We have to say this before anyone else says they can't cope and tries to push it all onto us.

Amen. While still working full time, running the household in the vast majority of couples, dealing with children. While the blokeS in the arrangement are just too "tired" after their day at work and cycle ride/trip to thr gym to do anything other than sit in front of of the tv and be waited on.
as long as women give, men (both those at home and those running service and the country which let's face it mainly run by men) will take

My dad moved into a care home specialising in Alzheimer's. There's a time you have to accept you can no longer cope. My mum hadn't slept properly in six years. The care home he's in is brilliant. The staff are wonderful. Unfortunately, my dad is declining rapidly and becoming aggressive.

@Backtothe80splease
Your father is selfishly doing all he can to work things to his advantage, women need to be more like men, be more strategic and work things to our advantage right from the start.

The thing is OP, we all only get one life and 24 hours a day. So if you give up the majority of your time to help an elderly parent with dementia, that is time you don’t have to spend with your teens, husband, working etc. I have been the teen in this scenario and honestly it’s crap when your parent is basically never there as they are too busy looking after their own parents. I strongly believe our priority is to our children. I’m not saying we shouldn’t help our elderly parents, of course we should, but not to the severe detriment of our children (which it would be when it gets to the point of 24hr care being required).

So the person who commented on your Facebook post either has no idea of the reality of caring, doesn’t have DC, or does have DC but is happy to sacrifice their best interests for their elderly parents. No one can have it all, we must all make these very difficult choices and make the best of what is often a very challenging situation.

I always think of it like an iceberg, people see an older person going into a care home, and use stupid phrases like them being “dumped” in there, but what they don’t see is the many many years of care that families have been providing leading up to this point, starting slowly and gradually getting to the point where people are forced to admit that they can’t do it anymore. I cared for my DM for 5 years of her Alzheimer’s before she went into a home. It was soul destroying, her husband ended up taking his own life in the first year, she briefly lived with us and I very nearly did the same. She has been in deep denial for a long time and became quite a bully with it. She’s now in a very nice home, I only found it by dealing with the local mental health team after she was given notice on her last home due to her behaviour. She is much more content now. I have spoken to professional carers who are brilliant at their jobs but have all struggled when it came to dealing with their own parents when they needed care and found that they couldn’t do it personally because of the emotional trauma. Statistically people with dementia live longer in care homes than they do if they stay at home, even with a relative to look after them. This stupid woman on Facebook is an idiot, I bet if her parents actually did get dementia and need care she’d run a mile, she is in no position to judge and ultimately a happy person doesn’t go out of their way to harass complete strangers online.

Sorry you're having so much to deal with as well as your own health issues. I would also consider deleting Facebook - it seems to be a pit of toxicity - I did it years ago and I'm so much happier - it's a drain that you don't need

I looked after a parent with dementia at home through complete incontinence and loss of all speech for years until death. Looking after a baby whilst working nights in an incredibly high stress job was nothing, absolutely nothing, in comparison.

I really recommend getting professionals involved. It is just so so so hard to do it yourself. And if you don’t want to, you don’t want to. That’s ok.