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Care & carers

Can't cope sometimes

(90 Posts)
luckyrose62 Fri 01-Dec-17 09:55:35

Just need to have a rant.
Mum 94 vascular dementia, registered blind, unsteady on her feet. Urinary incontinent. Hard of hearing especially on telephone.
Supported mum for over 30 years she didn't have all these health problems then she just couldn't cope without dad.
I keep losing my temper with her. I live 70 miles away. Hubbys mum and dad are in a care home in the same town. Vascular dementia & Alzheimers. He is also the only one. His only sibling died 10 years ago. We visit every week.
Fed up. Feeling even more stressed as my daughter has to have a lump checked out in 12 days. A 3 hour appointment, why 3 hours . Same day results though.

Luckygirl Sat 02-Dec-17 12:44:04

The fact that the LA does not have much money has no relevance at all - do not let them fob you off with that. Legally they have to meet her needs.

ajanela Sat 02-Dec-17 13:04:37

Your daughters appointment is 3 hours because she will see a doctor, maybe have a mammogram if that hasn't been done, then a scan so they can find the lump and take some biopsies which if you get the result the same day will have to be examined. Sounds a good system, I waited a week for the results. Sorry if others have already answered the question.

Your caring responsibilities, you deserve a rant. Where did it all go wrong, what is the future for us.

queenofsaanich69 Sat 02-Dec-17 13:26:31

I have been there --the final straw is the uncertainty for your daughter .You need to try to do something for yourself.
Could you talk to a good friend over lunch,friends get you through so many things,try to read your favourite magazine,too hard to read a book.Are you able to take a walk ?Do something nice for yourself .Maybe see your doctor to explain the situation,your condition will not be helped by stress so please make an appointment.
We will all be thinking good thoughts for you,look after yourself your very important.

SunnySusie Sat 02-Dec-17 16:18:56

I tell you what struck a chord with me luckyrose and that is when you mentioned the guilt. When we were trying to manage Mum's last four years the guilt was terrible. No matter how much you do it never seems to be enough and I used to drive off after a visit feeling horrendous. Having to leave such a frail old person locked in their home, virtually unable to communicate due to the deafness and totally unpredictable. It just felt all wrong and on the hour and a half drive home I used to beat myself up over it every time. In retrospect (she passed away two years ago) we did our very best. The reality was she really needed full time care and it just wasnt possible. I am sure you are doing your best too and thats all you can do as a human being.

willa45 Sat 02-Dec-17 16:28:25

Luckyrose62....

You have been a good daughter and your mother is lucky to have you. The issue with your daughter seems to have put you over the edge with everything else that has been thrown on your plate. Unfortunately, you don't have enough information on that front, so why dwell on worst case scenarios?

Would it help if I told you that most breast lumps turn out NOT to be cancerous? If perchance however, the lump is more serious, it still won't be the grim illness that cancer was decades ago. Today, people are LIVING with cancer; not dying from it. There are revolutionary new treatments for breast cancer and more importantly, they are also less invasive.

With regard to aging parents and ill health in general, we all have our crosses to bear, some heavier than others and especially as we get older. They can be so overwhelming at times, that the positive things in our lives become insignificant by comparison.

So, take a deep breath right now and make a mental list of all the things in your life that are good because they are important too....and no matter what happens, visualize the day that your daughter regains her good health.

Sending you healing thoughts, prayers and a virtual hug.

VIOLETTE Sat 02-Dec-17 16:33:59

Sorry to hear about all your problems ! I hope your daughter will be ok ....please don't worry too much in advance...the 3 hour appointment is quite common and is much better than being sent home, recalled for more tests, then recalled for the resut ...although it might feel apprehensive it is the very best idea ...good luck ! It must be difficult with your mum as well ..you have so much on your plate at the moment ...care of the elderly is in dire straits and the government even refused any mention of it in the budget which is scandalous ! If all the overseas care workers have to go 'back' I wonder how many others will be willing to do that work for the low pay ...a lot of attention is given to the needs of children, but not a lot at the other end of life sadly ! My OH has Parkinsons with lewy bodies (like dementia) he is now 84 and thing are getting difficult. I belong to a forum for sufferers and carers and found a lovely poem on there which I printed out to remind me that when I lose it and want to shout scream and bang my head on the wall in frustration it is not his fault :

Do not ask me to remember
Don't try to make me understand
Let me rest and know your'e with me
Kiss my cheek or hold my hand
I'm confused beyond your concept
I am sick, and sad and lost
All I know is that I need you with me at all cost
Do not loose your patience with me
Do not scold, or curse my cry
I can't help the way I;m acting
Can't be different, though I try
Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me
Love me till my life is done

I found this really moving ......I think we do try to remember what it must be like for the sufferers especially when they have days when they can remember their life as it was ....our turn will come when we get old .....bon courage flowers

Lorelei Sat 02-Dec-17 16:35:34

Luckyrose, I don't really have any practical advice to offer that hasn't already been mentioned, but can understand the need to rant when things get on top of you. You are coping with a lot of your own health problems and life is made that bit harder when you have other people and their needs to worry about too. Back to that age old saying about 'who cares for the carers?' Maybe take a little bit of time-out for yourself and try to cut off from the problems - even a very short hiatus gives you a minute to just breathe and think more clearly later on. I hope things improve for you and that things go well for your daughter, as much for your sake as for hers. Gransnet is a good place to rant and people are generally supportive - I hope that you will find some small comfort in the support we show - even reading and replying briefly to posts shows people do care. flowers

Cherrytree59 Sat 02-Dec-17 16:51:39

Welcome Luckylegs
I think I understand a little.
Like you I had a father with no hearing, blind suffering with vascular dementia.
Also caring for my mother in-law with age related dementia (92)
In the middle of all this my daughter was having major problems re her pregnancy with her first child.
I was so worried about my daughter that I was actually cross with both parents.
Irrational I know.
Is it possible that this is how you feel.
Your first instinct is for your daughter but you are over whelmed with the parents conditions.
And this has sapped your energy.

Hopefully all will be well with your daughter .
Then a few deep breathes.
It maybe time to consider some help and advice to move forwards with your mother's care.

flowers good luck x

H

M0nica Sat 02-Dec-17 17:05:35

Luckyrose, keep writing, some times, just having a rant helps. I find people like you and annsixty humbling. I have done my share of caring, but not with the intensity either you have done and I found it exhausting.

When finally we decided that my aunt and uncle were not safe at home and we moved them into care, I went to visit them to find myself solemnly arraigned before them, told they considered me responsible for their move into care and I was not to visit them again, they didn't want to see me. I almost skipped out of the home with relief. I knew it wouldn't last. Three weeks later they were inquiring where I was because they hadn't seen me for ages, so back I went.

Katekeeprunning Sat 02-Dec-17 17:49:20

That was a bit harsh Annesixty

SussexGirl60 Sat 02-Dec-17 18:11:04

Hi, I haven’t read all the replies so sorry if this is repetitive! That’s really a lot on your plate all at once. It’s awful how life dumps so much on us sometimes isn’t it. All I can say is, from my own similar experience, take care of yourself in all of this. Don’t do what I did and feel you have to make it all right for everyone.That kind of stress eventually made me very unwell and drastically affected my life, from which I am still reeling, years on. Know that you can’t control all that will happen, nor be there for everyone all the time. Measure out your caring so that some comes to yourself as well. Not instead...just as well.❤️

annsixty Sat 02-Dec-17 18:29:15

I do wish so much that people would read through the thread before posting it is very tiring, very wearing and very very annoying.

Marydoll Sat 02-Dec-17 18:44:16

Regular posters know you are a thoroughly nice woman Ann. Posters should always read the WHOLE thread before commenting.

loopyloo Sat 02-Dec-17 18:48:24

Annsixty, I think we should give people a little leeway here. I think everyone should be able to comment regardless of whether that they have read and taken in every word.

loopyloo Sat 02-Dec-17 20:11:47

Violette , I think that was just how my poor brother felt as he descended into dementia. He just liked me to be sitting next to him. Very sad.

MawBroon Sat 02-Dec-17 20:20:05

Katekeepsrunning nothing annsixty said could possibly be described as “harsh”so check things out the next time before you lash out at someone who’s the 24/7 sole carer for her DH with Alzheimer’s.
Unti he passed away three weeks ago I was darling Paws carer (not Alzheimer’s) but it was exhausting, draining and for anyone facing potentially another perhaps 20 years of the decline if their life partner, the outlook holds precious little hope.
luckyrose you sound as if you really need professional advice and help instead of struggling to cope all on your own.
There have been some informed constructive suggestions on this thread, I hope you can see your way to taking them on board.
And it would be helpful if nobody used this thread to cast aspersions on others.

Jalima1108 Sat 02-Dec-17 20:37:18

Thanks a bunch . Obviously your caring duties have made you bitter.

I realise that you are probably nearing the end of your tether luckyrose but annsixty sounds as if she was just being helpful and realistic.

It does sound as if your DM needs more care than at present so perhaps a nursing home would be the best answer. You are losing your temper with her and that is not good for either of you, so something needs to change.

I do hope your daughter's results are negative - it is a good thing that she will get the result on the same day, worth the wait.

I know what it is like to feel like a piece of elastic - stretched from both ends.

loopyloo Sat 02-Dec-17 20:39:06

I apologise if I have cast aspersions on anyone. So many people on GN have such difficult lives and have so much to cope with and give such good advice.

Jalima1108 Sat 02-Dec-17 20:47:41

Oh dear, I feel so sad reading people's stories on here about dealing with their elderly relatives.
I was much younger when mine needed care (but also had young children/teenagers and a job at the time) so I know how hard it can be and how worrying. Quite frankly, I don't know how I would cope with an elderly relative at my age and, reading the stories, I don't want my children to be put in that position either.

I don't know what the answer is.

flowers to all the stalwart carers

Marydoll Sat 02-Dec-17 21:01:55

I looked after my mother with dementia whilst bringing up three children, working full time and trying to study for another degree. I thought it was all up to me to look after my mother and refused to seek any help. I was consumed with guilt that as her daughter, I should be caring for her. That is until one day I broke down in tears at work and couldn't stop sobbing.
My colleague told me that I couldn't go on like this, as I was making myself ill and that it was time to ask for help.
I phoned the Social Work dept, whist my colleague stood over me and explained that I was no longer coping and I needed help and support. It was the best thing I ever did. My mother was entitled to support and benefits that I was unaware she was entitled to. The social worker was so kind. Carers came in 4 times a day to look after her and she had her lunch delivered daily. It didn't solve everything, but it took some of the pressure off me until my mother received a psychiatric assessment, which resulted in her eventually being given a bed in a nursing home, where she received all the medical care she needed.
So many on GN, suffering just now. I find it really upsetting reading the posts.

Overthehills Sat 02-Dec-17 21:29:53

I just want to say to all of you who are lookinging after elderly relatives that you are all fantastic. My heart goes out to you reading about what you’re coping with. You put me to shame, my DH’s health problems and my role as career are nothing compared with yours and I get so fed up with it at times.
I’ve read and enjoyed your posts many times MawBroon and I am so sorry to hear that Paw has gone.
flowers for all of you.

newnanny Sat 02-Dec-17 23:22:22

I hope your dd is ok. I think you are so worried about her that everything else you normally just about cope with is getting you down. If your dm still recognises you I expect you feel you must continue to go to see her and struggle on. Do you have any siblings? You have been caring for you Mum for so long it must be emotionally draining, but because of her age it could all end at any time. Concentrate on supporting your dd and take pleasure in your d gc. You could try asking your Mother's GP if she is safe to live alone or now needs to go into a home where she can be cared for full time and if this is possible could she move to a home closer to you. I thought if you had less than £26,000 the council had to pay for your care.

Laine21 Sat 02-Dec-17 23:38:43

luckyrose62, you will need to make a referral to social services for a social worker for the elderly to come out and do an assessment, you can either do this yourself, or ask the GP to make an urgent referral. The assessment is done in a very caring respectful way, with your mothers interests at heart.

the assessment will look at everything, home circumstances, medication, who does the caring etc... they look at finances, and if your mum has no money, then they have to arrange to fund the care.

they will either decide to put in regular carers if she is very independent and can live on her own, or will look at a nursing home.

As she is already in a housing association flat, is it independent living? (sheltered housing), the next step would be a place where she could get more care. If she is in her own flat, would she manage in a sheltered scheme, there are different levels and she would still have carers going in. She sounds like she is struggling to cope on her own and a more sheltered scheme would give her friends, contacts and a bit of a social life, and less pressure on you.

My advice would be to sit down and think logically, not emotionally, then write a list of the issues for your mum, health and welfare, so you can discuss this when you ring to make the referral.

My elderly parents are fiercely independent (with some serious multiple health issues) , and I am trying to keep them as independent as possible, for as long as that is feasibly possible, but thats hard work in itself, but hey ho :-) its a good job I have a brilliant manager at work, and a supportive OH.

I hope you can work out something that makes better for your mum, it will take the stress off you if she is happier and safer. take care xxx

Grannyart234 Sat 02-Dec-17 23:50:41

So sorry to hear of your problems it is difficult to cope with one thing but added worry about your daughter must add to you feeling stresse. Hope all goes well with checks. Make sure your Mum is getting all she is entitled to in the way of help and benefits and talk to her GP. You need time for yourself too so don't feel guilty you are doing the best you can in difficult circumstances. Good luck

Lilyflower Sun 03-Dec-17 07:53:15

Luckyrose62, you have my sympathy. You are under tremendous pressure and it is no wonder you are finding it difficult to cope.

My own mother has Alzheimer’s, now somewhat advanced though she still recognises the family. She was living in a warden controlled flat until things got beyond her. She has no assets and her rent was paid for by housing benefit. She had her pension and other allowances including attendance so was ‘in the system’ when her needs increased. My sister and I found a nearby residential nursing home and got her respite care there and while that was happening she was assessed for permanent living there. The council system is a bit slow and creaky but, after about six weeks, Mum was given a place in the home for which she does not pay.

I am sure you could get something similar in place for your mother if you persevere with the form filling and phoning the relevant people to move things along. We are so relieved with the way Mum is looked after 24/7 with regular meals and someone to supervise her taking her medication. She has friends and company and the staff are very pleasant. Mum is perhaps a little more bored at times than she was but often has pleasant times with others that she has not been able to enjoy for years.

I hope your daughter turns out to be OK too.