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Advice please - Carers UK Forum

Advice please

Guidance on coronavirus and a place to share concerns and support
I care for my 2 elderly parents. Mum 81 with severe arthritis and Dad 85. I also work full time. End of Jan Mums mobility went completely. Cannot lift legs into bed,get to the WC etc. Approached Social Services and have carers going in once a day plus alarm installed and equipment etc. I am currently on the sick. My problem is my dad sees caring for mum as my full time responsibility.I have a retired sibling who receives carers allowance but wont go. In the middle of getting social care in dad threw himself down the stairs and was in a &e. Mum has been given a hospital bed and I have spent the last 3 days moving heavy furniture as she refuses to have the bed & commode downstairs (Should say she cannot get on the stairlift). I cannot see any light at the end of the tunnel. Has anyone else been in this situation where ultimately they have to give up their marriage and job and life to care on demand? I'm fed up
To be honest, you are doing all the wrong things, probably because you are being bullied on several fronts and intimidated into doing things you don't want to! I've done similar things too.
Do NOT move furniture around. Get someone else to do that, IF it has to be done.
Is it realistic for mum to be at home? If she needs a hospital bed, she probably should be in a nursing home, arranged and funded by the NHS. Was a Continuing Healthcare Assessment done?
You must REFUSE to care, your role needs to be that of ensuring they have what they need, not being hands on. That's the role of the carers - once a day isn't good enough. Tell Social Services they must provide more care.
As for someone claiming Carers Allowance, and therefore not required to look for work, tell them to get on and provide care, immediately!
Do you live with your parents?
Are both your parents claiming Attendance Allowance?
Do you know why mum can no longer walk?
Can she stand?
Was any physiotherapy offered?
Was the home assessed as being suitable before she was discharged?
Were you asked if you were able to care, or did your parents say "My daughter will do it..." without anyone asking you?
Do you have Power of Attorney sorted out?
If mum can't walk, can't use the stairlift, and dad can't help, what would happen in the event of a fire if she is upstairs?
Sorry, I forgot the most important bit of all, your marriage.

This is absolutely NON NEGOTIABLE.
Your parents are nearing the end of their lives. Hopefully you and your husband are not.
When you get married, you make vows, to be kept.
There is nothing in there that says "parents must come first!"

You have an absolute right to choose whether or not you care, the only power your parents have over you is the power you let them have.

If they cannot manage at home on their own, with carer support from Social Services, or privately funded, then they must move into residential care.

I know this sounds hard, but we spent so long looking after our parents that we lost some of the best years of our lives, sadly my husband died soon after his father, from a massive heart attack. I'll always believe the stress of caring for our parents, our brain damaged son, and running a business caused this. Don't let it happen to you.
Thank you both. The Carers were going twice a day but Mum stopped that. She has had arthritis for years. She collapsed at home and was not admitted to hospital. Doc says that's as good as it's getting. Offered physio in the past but refused. Yes they should be in a residential facility but will not entertain the idea. I have been accused of trying to kill them when I broached the subject. Yes they're selfish and manipulative and I realise I have to back them off and tough it out. I've done what I have (involving Social Services) as I was at crisis point & to get back to work and normality for me and my husband but it cannot carry on. They seem to think this is my "duty" . I won't lie this last 2 weeks has been horrendous and I'm shattered. I just wondered if it's just my 2 or are other elderly parents toxic? Or is it the aging process. Pandamic and being isolated from my kids doesn't help.
I will not be moving any more furniture already told them. Its unreasonable. BTW I'm 60 so no spring chicken to do this. They're after me retiring but wouldn't have a life at all if I do
My parents were 6 miles away. Husband,'s parents 5 miles in the other direction. All entitled to highest DLA, one too stubborn to claim. Long story, but husband said sadly one day that our biggest mistake had been buying a house so close to them. We called ourselves the Thunderbirds, ready to jump at any second. Husband died soon after his dad, in his sleep at home, from a massive heart attack.
Hello Susan and Bowlingbun,
I am so glad I read through your thread. I have just joined and feel like I'm falling slowly into this trap by moving 5 minutes from my 87 year old mother. Until 2019 I was living in France and just coming over for Christmas and summer but each time extending my stay, which is how I got stuck here when Covid struck. Initially, like everyone, I thought it would be a matter of months and I could return to my life in France having set up appropriate support for my mother. She used to do all her own shopping and I was proud of her independance. I would do repairs, change lightbulbs and re-stock heavy goods, then ring every day at a set time for a long chat. Covid has changed all that, she now depends on me for shopping, moral support etc. We finally filled out the Attendance Alllowance forms and she is receiving the higher rate as she is now very arthritic. I have applied for Carers Allowance and hope to hear soon. It is only in the last few weeks that I have realised the emotional toll of crazy conversations when I am accused of being "uncaring", "not understanding" , I could go on .... but would rather stay positive. I have finally realised that she genuinely doesn't remember when she lost her temper over something and believes her re-interpretation of many situations. It is best not to disagree, as this is regarded as a personal attack. Trying to change the subject is dismissed and making constructive suggestions (just try stepping out now it is milder), is taken as cruel criticism. I am 63, I broke my hip 7 years ago and I'm used to dealing with my own arthritic aches, so I feel I'm in a position to be very sympathetic and make suggestions as to how to cope in winter. I've bought all sorts of gadgets, heating pads, etc, but I now find the regressive behaviour hard to deal with, especially reading through here and realising that it will only get worse. Any advice would be most welcome. Thank you.
Renata_2102 wrote:
Mon Feb 22, 2021 7:57 pm
Hello Susan and Bowlingbun,
I am so glad I read through your thread. I have just joined and feel like I'm falling slowly into this trap by moving 5 minutes from my 87 year old mother. Until 2019 I was living in France and just coming over for Christmas and summer but each time extending my stay, which is how I got stuck here when Covid struck. Initially, like everyone, I thought it would be a matter of months and I could return to my life in France having set up appropriate support for my mother. She used to do all her own shopping and I was proud of her independance. I would do repairs, change lightbulbs and re-stock heavy goods, then ring every day at a set time for a long chat. Covid has changed all that, she now depends on me for shopping, moral support etc. We finally filled out the Attendance Alllowance forms and she is receiving the higher rate as she is now very arthritic. I have applied for Carers Allowance and hope to hear soon. It is only in the last few weeks that I have realised the emotional toll of crazy conversations when I am accused of being "uncaring", "not understanding" , I could go on .... but would rather stay positive. I have finally realised that she genuinely doesn't remember when she lost her temper over something and believes her re-interpretation of many situations. It is best not to disagree, as this is regarded as a personal attack. Trying to change the subject is dismissed and making constructive suggestions (just try stepping out now it is milder), is taken as cruel criticism. I am 63, I broke my hip 7 years ago and I'm used to dealing with my own arthritic aches, so I feel I'm in a position to be very sympathetic and make suggestions as to how to cope in winter. I've bought all sorts of gadgets, heating pads, etc, but I now find the regressive behaviour hard to deal with, especially reading through here and realising that it will only get worse. Any advice would be most welcome. Thank you.
Hi Renata, Susan and BB
I'm reading your posts and just thinking how much they sound like myself and my husband with my parents. We lived in the USA for 5 years and had a wonderful quality of life. Husband had a good job and we could manage very well on his wage. Lovely house with a gorgeous garden and lake access for the cost of a half decent 3 bed semi here in the NE of England.
We came back 7 years ago, mostly because my parents were getting to the point of not being able to come out and visit and having more health issues. I'm an only child.
Back here and we're just counting the years until we can leave England again. Financially much , much worse off and we don't go anywhere because it's so expensive.

Renata, this ..... "It is only in the last few weeks that I have realised the emotional toll of crazy conversations when I am accused of being "uncaring", "not understanding" , I could go on .... but would rather stay positive. I have finally realised that she genuinely doesn't remember when she lost her temper over something and believes her re-interpretation of many situations. It is best not to disagree, as this is regarded as a personal attack. Trying to change the subject is dismissed and making constructive suggestions (just try stepping out now it is milder), is taken as cruel criticism" ........

sounds so much like my Mum! She can't remember what's gone on in the past or conversations and , most importantly, due to her short to medium term memory loss she can't remember when/if she forgot to do something. This impacts on us trying to get the care Dad needs, our relationships , my health and my marriage! Thankfully my Dad who, even though he has a diagnosis of dementia, is quite the opposite and very amenable.
I do worry slightly that he's vulnerable and sometimes I hear the way Mum speaks (shouts) and wonder if anything else is going on.
I'm 58 and have arthritis, plus an autoimmune condition that causes neuropathy (only in feet and hands at the moment) , fatigue, brain fog and balance issues. It's quite a rare condition so not much idea how it might progress or whether it might morph into a type of blood cancer.
Feel like I'm retired but in limbo with our lives disappearing in front of our eyes.

As others have said, I had to step back around Christmas time. I was exhausted mentally and felt like anything we tried to do to make life easier was met with negativity. SS weren't getting back to me and I didn't know how to get what we needed. I've recently had more face to face contact again, and I can see how things have deteriorated and it seems like stepping back has helped me regain some energy, but other than that nothing much has changed. I suppose it's about having the systems/services in place to step up when we step back.
I know the heartache and the tears, and the feeling that you have in some way failed, that goes with the realisation that the challenge of caring for a loved one is simply too great for you any more.
In my own mum's case, I kept her out of residential care for many years, she was well aware of this, and unprompted, thanked me for it. I did not live with mum. She lost the ability to stand and walk after having sepsis, and five months in hospital. The ward manager told me that even if mum had live in care at home, it wouldn't be enough. Sometimes, after trying every option, residential is the only option.
It’s only in the last few weeks that I have realized the emotional burden of crazy conversations.
Really feel for you all. Having read the bit someone said "carers role is to make sure the services/care is in place, not to do the hands on caring", has just really done me good. Thank you. So often services make you feel guilty