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Near the end of my tether

(43 Posts)
eddiecat78 Sun 16-Jul-17 09:29:57

My 94 year old father lives in a care home just 5 minutes away from me. He is there because of failing physical health but dementia is also starting. He is reasonably happy there but seems to be getting more and more reliant on me rather than less. I visit most days but he phones me at least once a day - usually about something trivial. He seems to be constantly thinking of things he needs me to do for him - the latest being that he thinks he needs a new hearing aid (he never wears the one he has got)
The final straw came last week when my brother who very rarely visits came for 2 days and Dad still found a reason for them to come to my house each day.
My own health is not good (severe IBS) and I feel in desperate need of a break from him but everytime I do visit he asks when I will be going again - and if he goes for more than a couple of days without a visitor he gets anxious and complains of feeling abandoned. My cousins visit him about once a month and he goes to church every week and there is lots going on at the carehome but he still seems to need this very frequent contact with me.
I don`t think there is an answer to this but I really needed to get it off my chest!

kittylester Sun 16-Jul-17 09:39:49

I think some of the responsibility to stop this lies with the care home. You could tell the staff that you will not be going every day and could they help your father ope with your absences.

The staff are naturally going to rely on you as they will be so busy but you are entitled to expect them to look after him when you can't get there. Speak to the manager and explain your health issues and rhe fact that it is all too much for you.

trisher Sun 16-Jul-17 09:47:21

So sorry to hear about your problem eddiecat78. Perhaps your dad just needs a bit of company and you are the only person he can call on. Would he accept a visitor who wasn't family if so Age UK have a scheme for once a week visitors. I wonder how he would react if you told him you wanted to go for a brea. Perhaps he is just settling in and things may improve. Hope so.

eddiecat78 Sun 16-Jul-17 11:42:51

He has been at the carehome 8 months now and they are absolutely fantastic - especially on the days when he gets particularly anxious. He has also made friends with another resident and can go and chat to him. Even so he seems to have to involve me in everything - he recently misplaced his address book and instead of looking for it instantly phoned me to ask for a number he wanted - I hadn`t got it and shortly after he phoned again to tell me he`d found the book! I think the dementia is also affecting his ability to make decisions so he wants me to decide everything for him.
This must all sound rather trivial but it is really getting to me. I`m afraid I don`t always answer the phone now if I see it is his mobile number. He knows we have a weeks holiday booked for September and is already panicking about it.

Christinefrance Sun 16-Jul-17 11:59:04

I think you have to be quite firm and tell the care home you will not be available on certain days. You could start with one day and build on that. You do need to take care of yourself as well. You could cut down on answering his calls, no need to feel guilty about this. It's a difficult situation with someone you love but sometimes a bit of tough love is required too. If you are ill you will be unable to help your father at all. Bon courage.

kittylester Sun 16-Jul-17 12:02:04

Goor suggestion re AgeUk trisher. Alzheimers Society also have people who will visit, as do RVS. A friend of mine does One to One for Alzheimers and takes his person out to garden centres.

I presume he has had a diagnosis of dementia? Being unable to make decisions is often one of the first signs of Alzheimer's Didease.

LadyGracie Sun 16-Jul-17 12:37:22

My MIL was in a lovely care home in Dorset, there were lots of outings and activities for the residents and the staff were fantastic, they asked families in some cases to only visit once or at most twice a week as some residents were unsettled and became difficult for the staff with more visits. Obviously we were kept updated when necessary. MIL passed away in February, at the funeral staff who were able to attend did, we had a collection for the homes social fund. On the other hand the care home my father was in was dire!

eddiecat78 Sun 16-Jul-17 13:06:40

He hasn`t had an official diagnosis of dementia but all the signs are there - poor short term memory, unable to organise himself plus the inability to make decisions. Physically he has advanced heart failure and his kidneys are starting to fail.
Ladygracie - I have wondered if my being there so much is stopping him from getting involved with the activities. Last week he actually had visitors or went out every day but was still pressurising me take him shopping because he didn`t want to have a whole day in the home.
I will look into finding a volunteer visitor for him - he says he wants someone to play bezique (cards) with and I can`t bear it!

Hilltopgran Sun 16-Jul-17 13:22:15

It is so hard to know what is the right thing to do, but it is not unusual when someone has early stage dementia for them to over relie on the person closest to them. Hard though it is, it helps if to set some boundries. You know he is not alone and being cared for so there is someone else to help him. One way is visit on specific days each week, so if he phones in between tell him you will be in on .... I found the staff picked up on my regular days and would on days I did not visit remind Mum I would be in another day. Your Dad should have a named carer, could you ask to meet with this carer and talk through the problem and how they can support your Dad better.

SueDonim Sun 16-Jul-17 14:13:14

Although I haven't personally had to deal with this, to judge from friends with elderly parents/spouses, this kind of behaviour seems incredibly common.

It is also incredibly wearing for the relative - in one case, a friend was phoned/texted twenty times in two hours! Sometimes the problem is that the relative forgets they have already called you and so repeatedly does the same thing.

You do need some respite from this so I'm wondering if a social timetable would help you and your father? That seems to work for some people. Each day has its events on it (maybe even include a time of day for your father to call you?) and have it set out a bit like an old-fashioned school timetable, so pink = shopping, blue = phoning you etc.

NfkDumpling Sun 16-Jul-17 15:25:17

Been there, done it, got the tee-shirt and the mug and the tea towel! Dad wasn't so bad as mum was still alive then and he had cancer which brought on dementia so couldn't use his phone.

Mum on the other hand ...! She was in a care home five minutes away. What she really wanted was for me to go in after breakfast and stay until tea time. Just wanted me there. Her comfort blanket. When I wasn't she phoned for the least reason. When we wanted to go away to visit DD1 and the DGC for a long weekend she worried incessantly about how she would cope. In the end I burst into tears in the corridor as I thought I'd have to cancel (which was causing problems with DH) and one of the carers gave me a cuddle and took charge and told me I was to go. I needed the break.

I'm sorry to say I used to tell fibs. It's necessary for survival. Your parent is turning into a child - but with the knowledge, craft and experience of an adult. It's their survival mechanism and you have to find yours. I volunteer at an NT pile with no mobile reception and I'm afraid I used that as an excuse many times. Mobile reception around is is bad anyway. I'm sure where you are it's terrible too - isn't it! And you are out a lot - aren't you! If I didn't answer the phone mum would leave a message and I would get back but not always straight away. I found that dropping in at irregular times worked for me too - otherwise she would clock watch and I'd be in trouble if I was late or if I needed to change the time. I expect you're also told there's been no visitor in days - even when you know there has.

Do speak to the care home manager and make friends with his carers. They appreciate your support, you're part of his care team. They have breaks and you need them too. I also found a lot of support from this lot on GN. There are many members of AARGH (Aged Awkward Relatives Group Help) here!

eddiecat78 Sun 16-Jul-17 16:09:28

NFK - thanks so much - it helps to find a fellow sufferer!! I`m afraid that I do sometimes tell fibs - the care home once phoned my mobile and I said I was at my daughter`s when in fact I was very near by! Then I had to remember not to answer the land-line! I agree that dropping in at irregular times is probably better - I usually go about 2 and if it gets to quarter past he`ll be on the phone.
I do feel terrible about this - he is still my dad and I want him to be happy - and he is not likely to be with us much longer - but I really can`t go on as I have been. The sad thing is that it is spoiling all my memories of him, wheras my brother who sees him rarely still thinks Dad is wonderful

ninathenana Sun 16-Jul-17 16:23:07

I empathise. Like Nfk I've got the T-shirt.
All good advice here. Just remember to put yourself first now and then flowers

NfkDumpling Sun 16-Jul-17 23:04:35

Irregular visiting also keeps the care staff on their toes. They never know when you're coming either!

And try, do try not to let the guilt get to you. You'll always feel you're not doing enough, but you are. More than. (Perhaps there should be an AARGH thread!)

Morgana Sun 16-Jul-17 23:47:18

All that worry will not be good for I.B.S. sometimes we have to put ourselves first. He is being well looked after and you r doing your best. Could u agree to phone him instead of visiting some days?

lovebeigecardigans1955 Mon 17-Jul-17 10:05:08

My sympathies - the passage of time seems to be perceived differently for people with dementia. I visit MIL every Thursday at her care home - I've got off lightly. She looks forward to these but insists that her son (my BIL) hasn't been round for ages - not true. She knows my routine but can't seem to remember that BIL goes every Sunday and Tuesday.
He went through the constant phone calls when she was in hospital until he told the nurses not to let her use the phone.
The only comfort is knowing that this won't last forever, sorry. Don't feel guilty - this situation is not your fault. flowers

dragonfly46 Mon 17-Jul-17 10:08:56

I am in exactly the same position although both my parents at 95 and 96 are in care. My mum has dementia and seems happy in her own little world but my dad is still trying to control everything. I go three times a week but have made it clear I also need holidays. Before they moved into the care home I had not dared go away for 5 years as I was constantly having to pick one of them up from the floor etc.
I am quite firm with my dad and told him that if he needs a catheter change, a doctor or a chiropodist he is to ask in the home and not ring me. They are being paid a lot of money to care for him and my mum. They have been there now, at their own instigation I must say, since September and things are getting better. Of course he has a list when I arrive each time - things to buy, things to tell me, things to moan about, but he is getting more relaxed. He still regards himself as my mother's carer although hopefully that is waining too as he sees how well they are looking after her.
My sister in law spent her mother's last few years visiting every day in the hope that she could make her happy but it didn't work as she had never been happy in her life. There is only so much you can do and unless you have a break you will be unfit to do anything.

mags1234 Mon 17-Jul-17 10:12:00

I know how Awful early dementia is. A visit to care home is needed, by appointment so they can set aside time for you. Say it as it is, and tell them how it's affecting you. In order to help care for someone long term, first you need to look after yourself or your health will suffer and u won't be able to help.
A coloured in timetable may help. Decide how many days you will visit a week and colour it in. ( you can always add surprise visits if u want to see how things are when ur not expected. ) any regular things can be coloured. A specific time for him to phone you can be coloured in. Def organise volunteer visitors e.g. For cards. If he sees something is on each day that might settle him.

Hm999 Mon 17-Jul-17 10:18:18

He rings you because he is lonely? Can he ring your brother In the evening? My dad used to ring his mum every day until he retired/she went into care home and was nowhere near a phone

NemosMum Mon 17-Jul-17 10:25:55

My dad is 92 and living with moderate dementia. My late husband had dementia and I'm a Dementia Champion for the Alzheimer's Society, so I've been through all of this! I visit Dad most days for a short time only - usually and hour before lunch or tea, and that makes it easier to leave. He rings me several times every evening worrying about something or other, and has usually forgotten I saw him only a couple of hours before. I just reassure him in a calm voice the same way each time, usually to the effect that I, or the staff,will sort it out tomorrow, and just settle down and go to bed. He never remembers the next day. What you need to do is work on your own reaction to stop it upsetting you. You cannot change your father, the only person you can do something about is yourself. Ask yourself what is reasonable for you to do, how many times you visit, and for how long, then stick to it. It is perfectly acceptable to tell 'therapeutic lies' if absolutely necessary. There is a good book called Communicating Across Dementia by Stephen Miller, which covers just the things you are concerned about. Good luck and hang on in there!

Lindylou23 Mon 17-Jul-17 10:39:33

My mum wasaid very much the same as your dad, with dementia their world gets smaller she too couldn't make decisions in the enday and relied on me for everything, the rest off the family did nor see as much as I did as they did not visit very often but I woUldale see it I calledon't ithe the Alzheimers mask would come down and she would be very disorientated like her your dad needs your reassurance. It is very hard. When he is no longer here you will be glad you did all you did for him with love to you

Tessa101 Mon 17-Jul-17 10:44:55

Oh how I wish my dear dad was 5 minutes away from me,asking to see me everyday.I miss him so much even after 25 years. Sympathise but bless him.

franjess2000 Mon 17-Jul-17 10:46:14

I would also suggest getting him an appointment with a doctor to do a dementia test. It could be that there is medication to slow the problem down.

Diddy1 Mon 17-Jul-17 10:46:54

You must think of yourself! you dont need to visit your Father daily, he seems to be happy in the care home, and has people around him who help I am sure, he has friends there too, he has got into a habit of ringing. Maybe as others have said, talk to the staff in the care home and explain you really need some time for yourself, they will understand. Or tell your Father to ring at certain times, as another person said, maybe an old fashioned school time table for him to understand, when to ring.I do hope things start to improve, and you have have time for YOU.Sending a hug xx

Witzend Mon 17-Jul-17 11:14:39

I do so sympathise. My mother was in her (dementia) care home for nearly 8 years and it was often very difficult and stressful for quite a while.
I do honestly think you should cut visits down - I know it's hard, though, because you feel so guilty. If his short term memory is failing he is likely to think you haven't visited even when you have. Even before she was bad enough to need the care home, my mother would insist that she hadn't seen anyone for weeks, when I'd just met my brother who was getting in his car to go just as I'd arrived!

Does he have his own phone? If so, and he is calling you enough for it to be stressing you, could it be 'broken' for a while - he might then forget about it. My mother had been in the habit of ringing my brother incessantly (I mean sometimes 30 times in one hour!) and for that reason we said a very firm No to a phone in her room. After the first couple of weeks, when she would often ask staff to 'ring my son' (except for once a day they would tell her he was out or not answering) she miraculously forgot all about it.

The other thing Ive heard of is to have a dedicated mobile for such phone calls, with a message on it to say e.g., 'Sorry, dad, I can't come to the phone just now, but I'll ring you back as soon as I can.'
And, except for certain times of day, leave that phone firmly off.

And try not to feel bad/guilty about it, easier said than done though, I know.
Old people can sometimes become extremely self centred and dementia only makes it worse - the person cannot comprehend that they are making excessive demands on you, or cannot understand or remember that you are not well and need your rest and peace and quiet.
All the best.

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