Shared Experiences

[daffodil62]

Hi everyone

My 94 year old mother went into a care home nearly 12 months ago because if mobility issues but she’s since been diagnosed with Alzheimers. She hates the home, thinks everyone is talking about her, that the carers have to everybody nit to talk to her, thinks she smells, thinks she talks like a baby when she’s had her teeth cleaned, thinks everyone is “planted” to spy on her; however, her memory is good and her conversation, apart from the obvious paranoia.

It’s really upsetting to visit now; I’d like to share my experiences and also learn from others to offer and gain support.

 

[karaokePete]

Hello and welcome @daffodil62

You have come to the right place for the support etc that you seek as the forum members are a friendly and experienced bunch.

I hope you have time to take a good look around this very large site as it's a great resource.

Ask any questions you may have and you are almost certain to get an answer. Just have a rant to ease stress if you wish as everyone here will understand as we all travel the same rocky road.

 

[daffodil62]

Thank you!

 

[daffodil62]

Wow, people on here are truly going through the ringer; I’m so glad I’ve found you all!

Your stories are heartbreaking but I feel the connection everybody has through the recognition and understanding of what we’re all experiencing.

I’m wondering if anybody is experiencing the same as I am with my mother who appears quite switched on so far as her memory goes and even her conversation can be quite normal. However, she is convinced that everyone in the care home hates her, calls her horrendous names and that the carers don’t like her, thinks she’s a nuisance and that she has to do as she’s told (like she’s in prison). She has limited mobility (that’s why she went into the home originally) has to ask to be taken to the toilet, is helped in and out of bed and to get ready in the morning and undressed at nighttime. The staff are really good with mum; she can stay in her room if she wants to, she can get up and go to bed when she wants to but in mum’s eyes she can’t; she’s imprisoned and has to do what she’s told…her opening line is always..I’m not allowed..

We can be sitting having a normal conversation and then she’ll say…they are listening through the floorboards you know..or she’s not who she says she is..they’ve planted her here to spy on me..she says the carers have told her it’s not all about her and that she can’t drink too much because they will be angry with her for asking to go to the toilet..the carers are in fact lovely and I know they have a soft spot for mum..she’s a little old lady in a chair, doesn’t communicate with anybody, is not loud or demanding in any way, in fact no trouble at all.

I suppose I’m asking advise on how I should handle mum, what to say to her when she’s obviously upset about not being liked and begging me to take her home. I have tried to reason with her as I couldn’t bear having her believe all the horrible things she thinks other people feel about her but we both get upset because she says I don’t believe her. I explain that she hasn’t the money for full time care at home but she thinks she has…

It’s getting to the stage now where I dread going to see her; I live a 3 hour round trip away, visit once a week and stay with her for 3-4 hours but when it’s time to leave she gets upset and says I haven’t stayed very long…my brothers live locally and visit together once a week too for about an hour.

It’s hard to say this but because she’s not totally consumed yet by the disease I feel that she is being tortured.

I am so sorry for the long post; it’s hard to put down in a few words what’s going on and even now I’m just scratching the surface!

I wonder if there’s anybody here who’s experiencing the same stage of the disease and share how they are feeling and dealing with it…

 

[yoy]

My mum went through a period of paranoia in her home. She variously thought something was going on, people were being taken away and killed, they were all being poisoned etc etc. If I mentioned she was safe because the carers would look out for her she would say that they were all in on it and that I should tell the police. In the end I would try saying things like I'll report it, I'll tell them in the office etc but it doesn't make any difference. After some weeks of this she started to get aggitated and a bit aggressive (I suppose she was petrified - if all this was going on and no-one was listening you would eventually start fighting for your life wouldn't you?). The home got the community mental health team involved, meds were prescribed, and she eventually settled down.
I obviously can't say what will happen with your mum - everyone is different. It may pass without any intervention. Or you might ask about a meds review to see if there's anything that can help. But it seems a fairly common thing with dementia to have some sort of paranoia - people stealing their things seems to be a very common one, as well as people talking about them. I'm sure others on here will be able to add more.

 

[jay6]

Hi and welcome @daffodil62 . No need to apologise for your post. Dementia is hard to understand but apparently what you are experiencing is a fairly common problem. As yoy says stealing from them seems to be a very common one. You won't be able to convince her she's wrong. All I can suggest is you just try and go along with what she says. Maybe say you'll tell the people to stop being nasty and hope it helps her. If she says they are listening just try making a joke and say 'Lets give them something to think about' Gosh it's so hard!

 

[northumbrian_k]

Hi @daffodil62 and welcome to the Forum. Our members have a vast amount of knowledge and direct experience of many aspects of dementia. What you have described is I think quite common. I understand why after a long trip you may wish to spend a good amount of time with your mother. However for both of you a 3-4 hour visit is a long time to concentrate and may seem more of an ordeal than a pleasure. My wife has been in her care home for 5 years and I rarely visit for more than an hour at a time (except on special occasions or when there's some sort of entertainment). You might benefit by having shorter visits. Try to keep visits light and breezy, distract from tales of woe and try not to respond to things that are clearly imaginary. That's easier said than done of course. Reasoning and rational explanations are of no practical use in the situation you are facing.

 

[daffodil62]

Thank you all very much; just having some advice is comforting!

I know the length of time of my visit isn’t good but I find it so hard to leave her; I haven’t visited her this week as I thought I’d try to go less often but I’ve felt really guilty as if I’m abandoning her…I want to see next week if she even noticed..hopefully not!!

Have a good evening all and thank you.

 

[northumbrian_k]

It does depend upon level of understanding, what the person notices, how much they realise about time and so on. My wife is confused in time, place and person. She seems content in her care home and in my presence but I can't say for certain as she is beyond expressing things in words. During Covid restrictions there was a period when I was not allowed to visit. When visits started again my wife seemed not to have noticed my absence. To her, I might have been gone just a few minutes.

Try not to feel guilty as your mum is where she is because of her needs. You haven't abandoned her. Whether you visited for 10 minutes or 10 hours she would possibly comment that you hadn't been there long! I try to take clues from my wife's behaviour and demeanour as to when she has had enough of me. Staying too long can be exhausting all round and counter-productive if the time is filled with repetition of woes (whether real or imagined). Go easy on yourself. You aren't responsible for your mum's health issues.

 

[daffodil62]

It does depend upon level of understanding, what the person notices, how much they realise about time and so on. My wife is confused in time, place and person. She seems content in her care home and in my presence but I can't say for certain as she is beyond expressing things in words. During Covid restrictions there was a period when I was not allowed to visit. When visits started again my wife seemed not to have noticed my absence. To her, I might have been gone just a few minutes.

Try not to feel guilty as your mum is where she is because of her needs. You haven't abandoned her. Whether you visited for 10 minutes or 10 hours she would possibly comment that you hadn't been there long! I try to take clues from my wife's behaviour and demeanour as to when she has had enough of me. Staying too long can be exhausting all round and counter-productive if the time is filled with repetition of woes (whether real or imagined). Go easy on yourself. You aren't responsible for your mum's health issues.

Thank you and best wishes for you and your wife too!

 

[Collywobbles]

I agree with the above. My Mum’s only in the middle stage of dementia and still in her own home. If I spend the afternoon with her and Dad, by the time I phone for my daily evening chat, she’s completely forgotten I’ve been there at all. I suspect she forgets as soon as I leave. The length of my visits really has no impact on her - at this stage it’s more to give Dad someone to talk to for a few hours.

My Granny went from being in a care home and mentally sharp as a tack, to sudden onset dementia via a lengthy UTI from which she never recovered. When Covid lockdown stopped us visiting, there was no indication from either her or the care home manager, that she had even noticed our absence. She had no real concept of time, which was a blessing to be honest. She’d previously not been slow in letting us know when she felt we’d been lax in our visiting duties!

 

[daffodil62]

I agree with the above. My Mum’s only in the middle stage of dementia and still in her own home. If I spend the afternoon with her and Dad, by the time I phone for my daily evening chat, she’s completely forgotten I’ve been there at all. I suspect she forgets as soon as I leave. The length of my visits really has no impact on her - at this stage it’s more to give Dad someone to talk to for a few hours.

My Granny went from being in a care home and mentally sharp as a tack, to sudden onset dementia via a lengthy UTI from which she never recovered. When Covid lockdown stopped us visiting, there was no indication from either her or the care home manager, that she had even noticed our absence. She had no real concept of time, which was a blessing to be honest. She’d previously not been slow in letting us know when she felt we’d been lax in our visiting duties!

Hi!

Your Granny’s situation sounds just like my mum’s; she’s had several UTI’s and really was so sharp when she entered the home. At the moment her conversation can be really good and we get lulled into a false sense of security until she begins talking rubbish; we used to believe her when she said she’d been left in the lounge until very late or nobody came to get her out of bed until lunchtime but it soon became clear that it was all imaginary. Because she goes from quite herself to somebody making up stories we’re learning how to deal with her (hence joining this great platform). Next week will be enlightening as we’ll see if she realises I’ve missed a visit…thank you so much for telling me about your mum and granny; take care of yourself and your dad!