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Care & carers

I'm Struggling & Feel so Guilty

(29 Posts)
stmoritz Sat 25-Jan-20 14:14:47

Hi all, I've just joined, mainly to put on this post and ask people for ideas and just for someone to hopefully understand.

Mum is 91 and very good for her age, she can shower and dress, make a cuppa and put a ready meal in the small oven, she can even do a bit of washing up.

Hubby and I have been living with her in her council house for 10 years, previously we moved in part-time and spent 11 months going between her house and our caravan in Sussex, that came to an end October 2018, when we had to sell up, mum couldn't be left on her own for very long, she can't get out with her trolley, so we have to be there to take her in the wheelchair for shopping a couple of times a week.

Last summer we built a lovely decking outside in the garden and we managed to spend lots of time out there and just be 'us', but now we are in with mum all day everyday, unless we go out, I'm finding I get very 'stifled' and struggle to cope with her constant asking about "what do you want to watch on the tv? She asks and asks all afternoon and evening, if I don't want anything she then calls out to my husband, who doesn't really watch it and sits with his ear phones on listening to music while on his laptop, we have spoken, argued, shouted and even sworn at mum to please, please just watch what she wants, we will ask if we want to watch anything in particular or I will watch it on my laptop or in my bedroom upstairs, but she won't leave it, her life is the tv and radio and her puzzle books, which she does constantly even in bed.

I have 3 children in their 30's and 40's but none of them bother, both my daughters have personality disorders, the closest has 3 children and struggles to cope with them and her house and we have always supported her and the children, my other daughter is in Norfolk, we are in Essex and due to her illness, we don't talk, she used to always have mum stay, but she's not able to now, so she doesn't help, my son, doesn't really bother with any of us, including my mum, so it's just me, as I am an only child and my husband, he is 65 and I am nearly 60, we have 5 children between us and 9 grandchildren, I have suffered with depression since 1994 and then had a breakdown in 2014 and gained stress and anxiety to the mix. This has left me with feelings of being pressured and stressed and the need to 'get away' or 'get out' and I cannot do to many things, although outwardly I am bubbly and confident, but inside sometimes I just want to die, I feel I've had 60 years and I just might as well end my life, the problems with my kids and now I feel so pressured and stressed with looking after mum, her constant TV questions and the fact we never get any time on our own, I just feel we can't be 'normal' and just be 'us' and feel very resentful towards mum, which I know is awful, I just can't see a light at then end of the tunnel, mum could go on for years, I did ask for respite but I'm only entitled for mum to go to daycare twice a week, we have agreed to go just one day and it starts on Monday,but she wants to know why she has to go? What am I going for? I feel bad because if I said to give me a break, she would be really hurt, she has no understanding at all of how I feel, even though I've tried to explain.

I feel so guilty that I have these feelings, I just feel my dad would not be pleased with me, he died 21 years ago very suddenly and I started getting the feelings of 'responsibility', guilt and resentment, very soon after his passing, if anyone has any advice, I just don't know how to get over this.

MissAdventure Sat 25-Jan-20 14:20:48

Could you possibly afford to get a mumsitter, so you could go out, once in a while for an evening?

My friend who does elderly homecare is often asked by families to sit with their relative as a private arrangement.

devonnanny Sat 25-Jan-20 14:34:06

When we managed to get daycare for mum one day a week it was put to her as an opportunity to socialise and meet new people, she still wasn't overly keen but at least saw it as something being arranged for her benefit. Perhaps this approach could for work for you

Fiachna50 Sat 25-Jan-20 14:57:59

Im awfully sorry you are in this situation. Yes, when I was a carer everyone vanished. Not much help from GP etc. As soon as they know the person will be looked after you are left to it. I would see if there is a carers group of some sort that you could all join. I also would ask the family, tell them you are toiling , if they would even be with her for an afternoon or evening. Family are usually the first ones to disappear, but it might be worth a try. Im not surprised you are depressed. Go to your own GP and insist you all need help of some kind, you cannot go on like this. If you end up ill who will look after your Mum?

Fiachna50 Sat 25-Jan-20 15:04:09

There is an organisation carersuk.org go online and see if they have any resources. Good luck and let us know how you get on.

BlueBelle Sat 25-Jan-20 15:08:11

When mum and dad got so they couldn’t go out so much they were offered one day a week day care Mum was completely deaf so had difficulty socialising although she was a very social person Dad was much shyer and not a group person so they were very hesitant They loved it and put it up to two days a week ...after my. mum had to go into residential it was Dads total lifeline and he became a very valued social member of
the centre
Personally I think it was a bad move to move in with your mum it would have been better to move nearby and help that way because it doesn’t sound as if any of you are very happy
It’s incredibly difficult to be with a very elderly mother full
time
I would take the two days a week offered your mum will get used to it ...tell her they need her help even old folk like to think they are still needed
Once she is used to the day care, visit or ring Age U.K. or any of the other age charities and see if they have volunteers befrienders or sitters and take as much help as you can manage so you and your husband can start to live again
You cannot sacrifice all your lives in this way this is not what your Dad would have wanted or expected

Buffybee Sat 25-Jan-20 15:13:38

Hi stmoritz, it sounds to me as though you are suffocating by having to stay in the house because of the cold weather.
I would try to get your Mum to go to the Day Care, for the two days you are entitled to. As devonnanny said, tell your Mum that is for her benefit, so she can socialise and meet new people.
Not sure if you have a car but on other days, take her in her wheel chair round Shopping Centres, garden centres and sit and have a coffee, even B & Q if you're desperate, as I used to do with my old Dad. 😂
I agree, repeating what you want to watch constantly is annoying but why don't you look through the TV guide is find some programmes you might like, or record programmes if you can do that, so when she asks you have something ready. Start watching Love Island, that might stop her asking. 😂
Joking apart, try to let 'it ' wash over you' and if it's driving you up the wall, go and lie on your bed. You don't have to be sat with her all day.

OurKid1 Sat 25-Jan-20 15:15:02

Not sure of your mum's needs - does she have dementia? If so, it might be worth checking out the Alzheimer's Society online Talking Point Forum. You can share, discuss and get support there - absolutely unconditionally - from people going through the same thing.

Also the Alzheimer's Society run a scheme called Side by Side, where a volunteer visits a person, usually weekly, takes them out if that's appropriate; if not, then just to keep them company, have a chat and maybe watch TV if that's your mum's thing. I am a SbS volunteer and take my lady out for a couple of hours for a coffee and chat. I also used to visit another lady who couldn't go out, just to chat and play Scrabble for an hour or so. Might be worth checking if there's a scheme in your area through googling Alzheimer's Society Local Office to get contact details.

I would definitely take the two days a week offered. The lady I see now was very reluctant to go out to meet others, but she now loves it.

Good luck.

stmoritz Sun 26-Jan-20 15:06:24

Hi, thank toy so much everyone, mum doesn't have dementia and I can go out and leave her, it's just, I feel like I can't have 'our' home, just to be us, without the constant keeping on every half hour, 'what do you want to watch now'? Gerry do you want to watch something? ' Mum he's not watching tele, just leave him' and so it goes on and on and on, she doesn't like not to ask, despite us not looking it, when we're do watch something, she normally doesn't like it, goes out and comes back in, looks and says, oh this is still on! She doesn't watch, soaps, dramas, films anything remotely scary, she likes animal things and quiz programs. Mum has first day at day care tomorrow, she's already tried not to go, because she didn't feel too good yesterday, I'm just hoping she doesn't play up tomorrow!

sodapop Sun 26-Jan-20 15:44:01

It's difficult being the sole carer stmoritz some things just get on top of you don't they. Take offers of help where where you can and try organising some separate space for you all if possible.
Look at some help for you as well, counselling for your depression and carers support group. Don't struggle with this alone.

granny'sbuttons Sun 26-Jan-20 16:03:27

Have a look at ‘action for family carers’ online. The Suffolk equivalent were really helpful when I was in a similar situation. They will help you claim possible benefits as well as giving you ideas about respite, ‘mum sitting’ and social events. Good luck and well done in all you are doing.

M0nica Sun 26-Jan-20 16:39:49

My FiL was offered two days of day care to give his wife a break. He too was resistant to going, but once he started to go he really enjoyed it. He got on well with the staff and soon missed it if anything stopped him going.

If your mother asks why she needs to go to day care. Tell her it is to enable her to get out and about and meet other people and because you and your DH need sometime to yourselves, and you are afraid that with out some downtime you may get ill and that might mean she had to go into a care home.

Don't waste time feeling guilty, it is a completely useless emotion and is better replaced by practical action.

Dillyduck Thu 30-Jan-20 10:16:35

Come and join us on the Carers UK website. You have a BIG problem coming up that you might not have thought of - will the council allow you to stay there after mum is no longer there, or will they evict you?!?! This should be your top priority.

PernillaVanilla Thu 30-Jan-20 10:20:15

Yes, do get in touch with your local carers group. People in your situation are entitled to a carers assessment which might well be gateway to some help to have time to get out on your own. You also might want to look at respite for her in a local care home, a week or so every few months.

Alexa Thu 30-Jan-20 12:14:47

You have every right to feel irritated so p[lease throw that guilt away!

The only way to deal with a person of any age who repeats nonsensical utterances is agree pleasantly and take no notice of the nonsense. I know this is difficult as she is your mother. Your love for her is obvious in what you do. The best thing you can do for her now is look after your own welfare .
Practically, can you wear some sort of ear protectors?

Alexa Thu 30-Jan-20 12:22:34

PS Or perhaps tell a white lie you want to watch some quiz prog or animal prog you know will satisfy her, and then leave her to it. May be get her a DVD player and DVDs with nothing but quizzes and animals on if there is such a thing. Is she deaf? If so why not turn the sound down, put on the subtitles and you go and watch another TV set ? It is a great advantage she actually likes and understands something on TV.

Alexa Thu 30-Jan-20 12:26:59

PPS Could you get her started on a colouring- in book?

www.amazon.co.uk/Adult-Colouring-Books-Paper-Crafts/b?node=266870&tag=gransnetforum-21

Alexa Thu 30-Jan-20 12:32:13

www.ecosia.org/images?q=colouring+in+for+geriatrics

Hetty58 Thu 30-Jan-20 12:59:50

stmoritz, you say you 'feel very resentful towards mum'. Well of course you do. After all, you are human, not a saint. There is no need to feel guilty about it. You deserve some life of your own and some time as a couple, without your mum.

Very elderly people seem to lose empathy and have no concept of how others are feeling. They tend towards being self absorbed. You probably get little thanks or appreciation for all your sacrifice and efforts.

You see the situation stretching out for years into the future. No wonder you feel depressed about it. Anyone would.

Get a needs assessment for your mum. Demand a couple of days off a week (at least) and carers should help her while you are absent. Get some of your own life back asap!

Alexa Fri 31-Jan-20 13:11:15

God I hope not all, Hetty! I am 88 and hope I can still learn.
I have known several older people than me who had a lot of empathy.

humptydumpty Fri 31-Jan-20 14:15:50

Sorry if this has already been asked, but is there any chance of renting somewhere nearby?

mamagran Wed 05-Feb-20 14:01:04

Hi stmoritz. Sounds like you're having a really tough time. I can't imagine how it must be to deal with this on a daily basis. I have been in a similar position before. The frustration, resentment and guilt are all natural. I've been in the position where I could not find the time to myself, but at the same time I would feel guilty that I am not using the free time that I have to look after my grandmother. At the time I read a lot about this online and also talked to people on forums who were in the same position as me. So I think that you are taking the right step by joining this forum. I would recommend reading more about this, it does seem like you are very overwhelmed. www.guardiancarers.co.uk/care-information/feelings-being-carer, whentheygetolder.co.uk/family/ask-lesley/how-to-cope-with-caregiver-guilt/. I know you've also mentioned she has Day Care, but she is reluctant to go. Maybe explain to her why it wiuld be useful to her? i.e. socialise and meet other people, play quizzes, etc. Or have you thought about having someone come in and spend time with her? I think someone has already suggested this above.

Luckygirl Wed 05-Feb-20 14:40:51

My OH has just died after I cared for him for many years, then had carers at home, then live-in care, then nursing home.

I regret many things but not that I looked after myself by making time to go out and do pleasurable things - I would be totally knocked out by now if I had not.

Looking after yourself is not selfish - it is simply common sense.

Hetty58 Wed 05-Feb-20 14:56:27

Well said Luckygirl. There is no way that you can care for somebody, long term, without taking care of yourself. I used to feel absolutely drained of all energy until I took a day off, went out and did something else.

Hetty58 Wed 05-Feb-20 15:07:42

My thoughts about 'What do you want to watch on the tv?' - Mum had a fixation with 'What's the time?' (asked regularly every 10 - 15 minutes - God knows why).

I completely lost patience with answering that.

I wrote NO in felt tip on a card and just held it up before her and pointed to her watch. Eventually it stopped. I don't know if the card helped, but at least it saved my breath and made me feel better!