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Care & carers

Can't cope sometimes

(89 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.

kittylester Fri 01-Dec-17 10:06:17

That's hard for you and your DH, luckyrose.

Are your mum and parents in law getting all the help available? Have you contacted the Alzheimer's Society and AgeUk? Your mum should at least be receiving Attendance Allowance (80+ per week probably) which could buy you some help. Have you had a Carer's assessment?

You are only human and can't be expected to cope all the time without it 'getting' to you in some way.

I hope all goes well for your daughter. Keep talking to us.

annsixty Fri 01-Dec-17 10:13:32

I don't wish to be harsh but some of us have this 24 hours a day 7 days a week.
You do at least have time out as I don't suppose you travel 70 miles every day to be with her.
I have just accepted that that is the situation and I get on with it.
I do understand though that worrying about it from afar is hard but short of getting more care for your mother, I can't see what you can do.
Your mind would be more at ease if she was in care like your in-laws.
With your D she is lucky to be getting all the tests done in one visit and getting results, all the best to her and to you for the worry.

luckyrose62 Fri 01-Dec-17 10:26:01

Yes annesixty I am relieved to not have to do 24/7 I don't know how people do it. I hope you are fit and well with your 24 hour caring if it was hubby or children I would accept it awful to say but she never supported me much.
I have multiple sclerosis myself
Just needed a rant not pull your socks up attitudethanks a bunch I am a newbie with no one to talk to. Thanks a bunch . Obviously your caring duties have made you bitter.

luckyrose62 Fri 01-Dec-17 10:31:32

No there is nothing I can do I worry 24/7 just sometimes need to talk .
It's obviously not the right place to be. I did phone a helpline but they are busy .

fiorentina51 Fri 01-Dec-17 10:36:56

I'm in a similar situation, though thankfully, fit and well. Everything we planned to do has been sidelined as we have other responsibilities. I understand the need for the odd rant Luckyrose, so don't leave. Stay and let rip occasionally! 💐

Billybob4491 Fri 01-Dec-17 10:40:57

Luckyrose62, I do feel for your situation. I am a 24/7 hour carer, and irrespective of distance, it can take its toll on you. Its not easy. I hope your daughter has a happy outcome, which hopefully will put your mind at rest.

Friday Fri 01-Dec-17 10:46:49

I’m sure most of us on here can sympathise with your situation. Do keep posting if it helps.

loopyloo Fri 01-Dec-17 10:47:30

Lucky rose, could you try contacting her gps surgery to see if you can get help? Could she go on a waiting list to get into the nursing home your husbands parents are in. Could you talk to the manager there. ? Sometimes if you build a relationship with people they can be very helpful.
Best of luck with it all.

luckyrose62 Fri 01-Dec-17 10:53:37

Thankyou fiorentina and kitty lesser. I think the guilt is what's plays on my mind. I have to guess what shopping she wants. I get cross because she tries to do her own washing by hand. And her flat and sometimes she smells. She went in respite when we cleared it up and was nice and fresh. I got cross with her this morning, she said she was in a pickle trying to brush the floor. When she falls she can't get up.She loved it in respite care. She has no money so that's not an option. She does get Attendance which goes to her home care council her cleaner( who is expensive but tells me what she has been doing. She has food that just goes off in the fridge and survives on Wiltshire farm foods which she hardly eats. She doesn't starve as she grazes all day on cakes biscuits etc. Anyway thanks for the rant , we are grateful that hubbys mum and dad are being looked after, eating properly and have social interaction. Not sure what will happen when the money from their house runs out. I keep telling myself mum is not mum anymore and I am just doing the compassionate thing that I would do for any elderly person. My MS is not too bad I have been very lucky. I do suffer with anxiety and have lost use limbs and sight but it all came back. My neurologist told me to keep negative things out of my life, not easy though is it.
So thanks for listening.

annsixty Fri 01-Dec-17 10:55:07

Luckyrose, I am so sorry that I upset you, it is not like me to do that and I didn't mean pull your socks up.
We all need a rant and I do it myself, on here, many times so I hope you can carry on with us here and do the same.
I am far from being a bitter person I hope.
Please stay with us and accept my heartfelt apologies for getting off on the wrong foot.

Fennel Fri 01-Dec-17 10:58:37

I can understand your frustrations - you have so many demands made on you,, I don't know how you do it.
Does your Mum still live in her own home? If she's as poorly as you say she probably wouldn't notice if you didn't visit so often.
I had a similar situation with my Mum, often got irritated with her, (I still feel guilty about that) and she wasn't as disabled as yours.
Hoping the outcome is good for your daughter.

Fennel Fri 01-Dec-17 10:59:44

and ps, look after yourself - we don't want you cracking up !

WilmaKnickersfit Fri 01-Dec-17 11:03:21

Luckyrose This is the place for a rant, so hang in there.

I also have MS and we're supporting my 82 year old FiL who lives in a sheltered flat - except the wardens or scheme managers as they're now known, are only there weekday mornings. He's virtually housebound at the moment and needs a carer first thing (that can be a problem in itself). He's insulin dependent diabetic with other health problems, but he manages pretty well. Our problem is that he is terrible at telling us if he needs something or has a problem. It's like getting blood out of a stone. DH takes him shopping once a week after work and I take him to his many health appointments. We find this a strain, so being 70 miles away must be hard. My FiL is lovely, but a bit of a devil for trying to do things he can't manage. He's getting better though. Visiting him daily when he was in hospital for almost a month earlier this year was hard. Until then he was still driving every day, so it's hard for him to get used to the loss of his independence. He may be able to drive again and that's his goal.

We all have different problems and you'll always get someone posting about how much harder they have it, and as true as this might be it doesn't help when you're just looking for a bit of support. There will be plenty of people offering that too, so stick around and get a feel for the place.

All the best for you and yours.

grannyactivist Fri 01-Dec-17 11:03:55

Hello luckyrose62 and welcome to Gransnet.
Caring, even for those we love, is often hard to manage; not just all the practical stuff, but the emotional weariness that can be so draining. Many on Gransnet are full time carers, and others, like you, have multiple caring roles with various relatives. It can be a privilege or a chore - and sometimes both depending upon our own state of health and our past relationships with those we care for. Every single person who is a carer deserves to be supported in their role and receive encouragement for the job they do. flowers
Carers UK
Carers Trust

Luckygirl Fri 01-Dec-17 11:08:04

I am going to be blunt here - those members of your family with dementia are unlikely to recognise you at some stage, and you need to put a protective wall around yourself and let others take responsibility for their care. Does your Mum know who you are when you visit? - if not there is no point trekking back and forth all the time - set up carers and let them get on with it and just visit occasionally to monitor the situation - TBH if you keep losing your temper with her, she is better off with professional carers who do not have the same emotional involvement. Losing one's temper is entirely understandable - I got so close to it the other night with my sick OH, so do understand.

If you are unwell yourself, you need to try and look after yourself and farm out whatever you can in terms of care of others.

Concentrate on supporting your DD - it sounds as though her local hospital has an efficient system that gets her a speedy result - hence the 3 hour appointment. I do hope her results are favourable.

By the way, I know that annsixty would understand your situation entirely and would not dream of saying aything amiss - I think you are feeling a bit on the edge at the moment - and who can blame you.

Take care. flowers

WilmaKnickersfit Fri 01-Dec-17 11:09:20

PS luckyrose annsixty is a lovely member of GN and very supportive. She's got an awful lot of on her plate and still finds time to offer advice. Please don't think her bitter and give her another chance. flowers

luckyrose62 Fri 01-Dec-17 11:13:46

Thankyou Anne sorry for calling you I just feel like crying and smashing something, which I will get over it I usually do. I should be able to switch off as I am not there all the time. I try so hard to make things easier for her. Easy to open things. She can't read anything. We went all that way just to switch a button on her tv between visits . It's all the little things like getting battery lights for her Christmas tree. So she doesn't mess with it. She also nearly got a shock because she couldn't see she had trapped a wire and it was bare. Luckily her cleaner spotted it before she touched it. Carers although some are brilliant are different ones and they make her a cuppa and her Wiltshire and a sandwich and a cuppa that's it. They ask if she is alright or needs anything else she says no. She burnt her face with a product, I think she used Andrews wet wipes oN her face. Which I stupidly got her and told her it was for freshening her undercarriage. I try and fail . Right I am over it. Thankyou all for letting me moan. Even you Anne, ha ha. I hope if I do come on regularly I can be of help with listening or advice.

Willow500 Fri 01-Dec-17 11:14:59

Been there, done that and it's very hard. We were full time carers for my parents both with dementia and my in-laws both had terminal cancer 70 miles away. We were pulled in several directions literally on all fronts. When my mum went into care and MIL passed away our fathers were both left at home on their own so we were constantly worrying about what they were doing, had they fallen (both did) and were they eating, what were they eating etc. As you have MS yourself this must be an even worse worry for you. Would it be possible to get your mum back into respite care with a view to full residential care - if she has dementia and in danger of falling the SS are likely to insist she does anyway at some point which is what happened to my mum. If she has no assets the council would have to cover the costs - unfortunately this might mean you don't have any say in where she goes but hopefully you would be able to visit the place to check it's ok. Above all as has been said you need to look after yourself. I hope you manage to sort something out.

annsixty Fri 01-Dec-17 11:17:21

That's good to hear Luckyrose, we do want you to stay and both get and give support.
Are we friends now?

grannyactivist Fri 01-Dec-17 11:18:02

May I echo what Wilma has just said? annsixty's immediate apology is testament to her lovely nature - but her initial response gives an indication of how hard it is to constantly be worn down by the daily grind of juggling the difficulties of caring and trying to not to let it impinge on everything else!

grannyactivist Fri 01-Dec-17 11:23:51

Honestly - right now I could cry! I see my lovely parents in law being worn down emotionally by the demands of caring for two mentally ill relatives and time and time again I come across carers who are struggling so hard and trying to do the best they can, but all the time knowing that there is no magic wand and precious little help to be had. I take my hat off to every single one of you. flowers

luckyrose62 Fri 01-Dec-17 11:24:22

Yes lucky girl she does know me, she doesn't know that I have just been and sometimes thinks I live in the same flats. She is at the with it stage sometimes and totally talks weird at other times. My mum in law is like the living dead and father in law is talking about the past as if we were there. . They are being cared for wonderfully well in a care home with lovely carers. There is no money in the local council to pay for mum to go there. It's not one of the expensive ones.
I think I am feeling more upset about my daughter who works full time and has a 3 year old , her hubby went off with another woman almost two years ago and lives out of the area. She has just got her own house and car. Life seemed to be picking up for her, now this breast cancer lump. I keep thinking what if!!!!!

Antonia Fri 01-Dec-17 11:32:30

Lucky rose, I don't have any advice other than that given by other posters, just to say I am sorry you are going to through this and wish you all the best. Gransnet is a great place to post and get practical advice. Hugs and flowers

GracesGranMK2 Fri 01-Dec-17 11:49:09

luckyrose62 you really do have my sympathy. No one can know the complexities of others lives and we do not know what we will cope with and what we will find difficult.

My mother had her 97th birthday on Tuesday, has Alzheimer's, has been blind in one eye for years and has now nearly lost the sight in the other and also has mobility problems - oh and she's deaf too. I do not say this for sympathy but to tell you that I had to give myself a talking to the other day. These things have, as they do, all got worse gradually and I have got older too.

Last week she lost the hearing aid from the better ear and blocked her kitchen sink. It wasn't her fault but not having things fixed instantly makes her anxious which triggers a fairly high level of anxiety in me. I was rushing round trying to contact the insurers for her hearing aid and unblock the sink. That was when I stopped and talked to myself. Mum has insurance in place for the unblocking of sinks - why was I trying to do it myself? We got that sorted and it triggered me to ring the local authority to ask for a sensory assessment as it is the blindness together with the Alzheimer's that is causing the upsurge in the problems.

I wonder if it is time for you to call on some outside assessment and help. I am always amazed at the simple things that make life easier - although that doesn't stop me wishing there was more actual help available so I could just love my mum.

Also, have you had your own health checked. I put things down to the stress of caring which turned out to be minor enough to be able to be improved fairly easily - but it has made a tremendous difference. For example, my GP and I agreed that I was suffering from anxiety - not surprising in the circumstances but, just to cross all the 't's, etc., he sent off a blood test. It turned out I have low thyroid. No wonder I was always cripplingly tired! Tablets and time to adjust and I am better able to cope (some of the timesad).

I don't know if this will help but I hope writing on GN does. I think it makes us feel less alone on what can be a bit of a lonely path.