I have posted on here previously about the stress of caring for my 96 year old MIL.
We have had eight years with no holidays or any real break. The last couple of years have been awful with MIL becoming increasingly frail, definitely some memory logic issues ( everything is “broken” but it’s her not remembering how to use it), and more needy generally.
However, this was paired with an increasing lack of awareness of how much I was doing, alongside carers who she said she didn’t need.
To cut a long story short, she recently had a really bad fall and injured her leg, head and arm, she was in hospital for 3 weeks. During this time I spoke to a person doing an assessment of MIL in relation to her ability to care for herself.
I explained that basically she couldn’t.
On discharge the assessment stated that MIL had carers only 3 times a week and she does her own cooking and cleaning!! This was based on what MIL told them! So a real waste of time, and actually quite dangerous….
I think the fall really scared her and whilst in hospital she said she wanted to move to a care home ( something she had alluded to a few months back when she was ill) She also has high anxiety about her health and I think the idea of 24 hour care appealed to her.
Two months on and she is in a really nice local care home. Clean, lots to do, good food etc etc.
A doctor and nurse visit regularly, it suits her.
However, she won’t join in anything unless I am there and wants daily visits. I have been doing these in the hope of her settling in.
She also has a phone and calls to complain most nights.
Yesterday she told me that the carers invite groups of lorry drivers in at night and have parties and start fighting??
She is also convinced that other residents use her bathroom, I checked this and they don’t, all rooms are en suite.
She has a leaking leg at the moment so her bed is changed daily, but, she says she is left laying there for days! I know it’s not true because I visit and see clean bed linen.
Today, I had my first break from visiting her and the home phoned me saying she needed some dry slippers and MIL had said as I only lived ten minutes away I would bring them in.
Like an idiot, I did, but I really feel I’m being played by her.
What would others do?
Have others experienced anything similar?
I really don’t think she could look after herself as her mobility and vision are poor and she has heart and kidney failure and her memory is definitely on the wane.
Please, feeling down and in need of advice.
Thanks in advance.
Hi Jane, sounds a stressful time. When mum was in a care home for respite which was about 10 mins away, she had me back and fourth like mil done it with you. My regret about being so close was I was doing my role as a carer and not just resting and sorting out things but also being caught twice in paying and no refund as it was cut short. Mil will get use to it in time unless she needs to be somewhere else due to extra care. You will have to take little steps to breakaway.
Many thanks for your reply.
It is easy to feel guilty about elderly relatives in care homes as I have known her for 40 years and know her as strong, vibrant and single minded.
Seeing her now is sad, which is why I probably visit as I do.
However, it really is too much and emotionally draining.
Hi Jane. My mum was in a care home for her last year, such a relief for me, after years of caring I could be just mum’s daughter, not Girl Friday who was fever lists of jobs although I too was widowed, disabled, with a brain damaged son and a business to run! Before mum was admitted I had a long chat with the Matron/manager, and later with the Care Manager. They appreciated my situation, and supported me through her final year. Make an appointment to see Matron about staff ringing up. Make sure you agree a system. Visit once a week. Put your answerphone on, and say “I’ll be in on Saturday and do it then.” If mum chooses not to participate in anything, that is her choice. Mine rejected all interaction with others, but had been determined not to join in things at home too!
BB - many thanks for your reply.
That’s a good idea about speaking to the manager, but because MIL continually raises problems, I do this a fair bit ( and feel a bit awkward as there is never any substance)
However, I do have control over whether we answer the phone etc…. As for visiting, I don’t think she could accept once weekly!!
I will need to cut down though.
I can’t believe how anxious we still feel…… I long to relax and feel a weight lifted from my shoulders.
You do NOT have to do what she wants all the time. The only power she has over you is the power you let her have. She is now in 24/7 care. The only way you can reduce the number of times you visit is by being determined that you won’t, expecting “elderly toddler” behaviour as a result. Maybe start by visiting 6 days a week, then five? However, you are entitled to a happy life too. My husband died at the age of 54, before my mum who died at 87. So many of our own dreams unfulfilled. Isn’t it time you both enjoyed things together again? You know mum is safe, whatever she thinks.
All sounds very familiar sadly. Sounds like your MIL has dementia. My Mum was lovely and never pressurised me but she did get very confused and, like your MIL, used to say people were using her ensuite loo, stealing her crochet hooks, taking her newspaper etc. best thing is to just say “really” and change the subject. Distraction really is the way forward.
You need to tell the staff to sort something out with her phone because you can’t be on call like that. If her memory is going maybe they could pretend it’s not working and then it doesn’t get repaired.
You need to sort her mobile phone out asap. Most UK phone companies offer a variety of models if you are looking to obtain a new mobile phone rather quickly too. Best wishes to you as well. I would begin your inquiry directly face to face at the store by talking to a member of the shop team about the whole issue with her current phone.
If possible try to show them her phone and see if they can repair it or not. Alternatively discuss the price of a new one. Otherwise you can see if you can find a second hand one. Many providers tend to offer a range of phone deals in the actual store to attract customers. Talk to a shop worker who can helpfully advise you further or find out if people online can offer tips. It is worth a go anyway.
Thank you all for your replies, it’s much appreciated that people take the time to answer.
I think my ignorance of dementia shows as I have always thought it was all about memory, not logic and making up bizarre stories!! So I will bear that in mind.
Dementia covers many things. One of our members, Pet, will be along presently. Her husband had many “confabulations”.
@Jane_22031234567 Hi!
I really feel for you - I had to re-read what I’d shared about my Dad before, so I could remember what had happened previously to MIL and you…(we’ll have to see how threads can get linked, so that you don’t have to repeat explain things!)
Sharing a few links, which could maybe offer some insights:
My one big lesson with dad was - calm and stable and following routine enabled him to feel safe and oriented. Sounds like the care-home is doing that and you’ve got a good one! YAY! She had the presence of mind before to WANT to go to a care home and from what you say, she’s safe, well and cared for. Perhaps the dynamics, movement and noises in a home are discombobulating her ‘quiet’ routine, with no clear points of reference to / for her…
Sad to say this but I literally repeated to Dad what to expect and the routine - staff and carers at the home will know this, but consistency and awareness helps dispel stories.
Also sad to say, there will be MANY stories…one to prepare yourself for, which is common is the person feeling they are being ‘jailed’ ’ held against their will’, some of this led to a few ahem conversations with family once… depending on how symptoms evolve it’s good shes in a care home as they will be primed to issues of ‘wandering’ or ‘trying to escape’.
'‘sundown’ is also well known as a time when anxiety and issues may arise…
I hope I’m not increasing worries, after what you wrote about not knowing much about dementia I thought this could help.
Also - as things with my Dad showed, whilst you’ve known her 40+ years, she’s not who she was before, so as I found out, try not to compare or reference to ‘before’…cognitive reasoning declines quickly…
you’ve done amazing things, to ensure she’s safe and cared for! BIG bravo - resources and good places are limited, to say the least.
What Dad could understand and enjoy: NCIS reruns, simple stories…although he didn’t often see it to the end…NO complicated stories or films with flashback memory to present day… story things…Oh dad liked Star Trek generations…or wildlife or food programs. Something to watch if you visit perhaps or topics of conversation that engaged without anxiety:
Favourite childhood food or any fave food, or place…Nostalgia is magic and SO comforting!
hope those ideas help…here if you need other thoughts
(@Pet66 will probably add in tomorrow, I know it may be difficult today)
I cannot really add much to this discussion apart from people with dementia do go for ‘confabulation’. I totally agree that you need to wean her off the visits and maybe only go every other day? She is safe, cared for and has people on call 24/7 so you do need to start to disengage and get back some sort of life for YOU and your husband. I know how easy it is to type this and how hard to put it into practice.
I agree with BB too that you need to have a chat with the Care Home Manager and stress that you just cannot be on call 24/7 as your mental health is important too. I bet they will have had experience of this with other patients and will hopefully be supportive.
You are obviously a very caring person but 8 years is a very long time and sadly old people can be very very selfish.
Hi
As Bowlingbun stated my late husband had many confabulations! Some were quite nice as in he had been away to Barcelona or such places yesterday. I always asked was the weather good. Yes great was the reply. Then he would tell me he was going somewhere else tomorrow. I could cope with these because he was in a happy dementia mind. Other times weren’t good. Horrible things in his mind happening. Then would have to think on my feet. He always seemed to accept my explanation that his medication had been taken late causing dreams
As for the phone, when he had delirium, he constantly phoned especially throughout the night, accusations flying at me. Nearly caused a breakdown. I took the battery out of his phone ( with much guilt) . Then said would get it fixed. He did ask a few times where it was but then seemed to give up. I know many would think human rights etc. I did. However my own mental health was taking a bashing, alway was phoning family in the early hours to collect him.
Visiting, it does help once you accept that they are being cared for, so everyday isn’t a must. It takes it toll, constantly visiting. I loved my husband very much and realised I had to look after my own state of mind so could visit and care manage for him.
A friend of mine’s Dad had dementia and got so confused and agitated that his elderly wife could not cope with him at home. So they found him a good care home.
He had been very high up in the Army and travelled the world and was used to commanding hundreds of people. After a couple of days he thought he was on a huge ship and he was the Captain. He would spend all day telling people about weather conditions, where they were going etc. One of the staff brought him a Captain’s Hat back from the seaside and he wore it with pride and his anxiety and confusion really improved.
Thanks for the replies and your experiences, it does help.
At the moment MIL is convinced that she is being given medication she doesn’t need because some years ago she got a man the sack (???) and his wife is now the doctor that does her meds!
It’s also like she’s is losing any “filter” she may have had and can be quite rude to people.
Other times, fine, but miserable……
My Mum was the same. Covid hit when she was at her worst, but the last time we took her out for a meal she was very difficult to manage.