Caring for more than one person

[sheepfield]

Hello everyone!
I just thought that I'd share an experience that I had recently in case it's helpful to someone else.
I'm caring for my mother in law and autistic husband and my mother in law recently had a trial of a new telephone to help with hearing and seeing and has also forgotten her PIN, telling us that they don't usually ask for it at the Post Office (!).
My husband has only gone and unplugged the new telephone and put the old one back bless him! He didn't know what it was for apparently.
And he was meant to be helping his mum with her PIN as a reminder arrived in the post but of course she didn't know how to peel off and reveal the PIN. I asked if he wanted me to help, he said no but then just left her with the letter! So I've ended up doing that too.
I'm finding it hard to balance looking after both people, involving my husband whilst recognising his limits.
I'm also autistic and an ADHDer so finding this communication, organisation etc stuff difficult too!
I guess that many of us are looking after ourselves and other loved ones as well as a person with dementia.

 

[Izzy]

Goodness @sheepfield.

I take my hat off to you. I cared for my elderly mother who had vascular dementia and lived with us as well as my husband who had Alzheimer’s. That was nothing compared with what you’re managing.

I hope you either have some outside help or will seek this when yiu think the time is right.

Sending my best and wishing you strength.

 

[sheepfield]

Hello Izzy, it sounds like you've had a full on experience of dementia caring for two people. I guess that every experience of dementia is unique, people forget different things and personality changes in different ways.
My mother in law lives in sheltered accommodation and my husband manages to work so I have some time away from them to look after me. I move between different part time jobs but it's stressful peopling and following instructions and hard for me to keep a job.
My husband has a support worker and we're in the process of arranging carers and home help for my mother in law to help with medication, meals, laundry and shopping etc.
It's been mega stressful since my mother in law had a fall a month ago. I suppose that the only good thing to have come out of it is that she is finally open to outside support.

 

[sheepfield]

Just an update from me. I'm not sure that my mother in law has been remembering to eat or has the energy to make even a jam sandwich. Perhaps she's lost her confidence after the microwave near miss with the dry Cup a Soup powder.
My husband says that he's not enjoying visiting so I'm going to visit her more often separately so that she can have more attention from me as well as carers and home help.
And I'm going to find some more fun things for me to do to look after myself and get me through all this. I've been meaning to try a choir and a dancing group for a while, now is the time.

 

[Skellei]

Hello everyone!
I just thought that I'd share an experience that I had recently in case it's helpful to someone else.
I'm caring for my mother in law and autistic husband and my mother in law recently had a trial of a new telephone to help with hearing and seeing and has also forgotten her PIN, telling us that they don't usually ask for it at the Post Office (!).
My husband has only gone and unplugged the new telephone and put the old one back bless him! He didn't know what it was for apparently.
And he was meant to be helping his mum with her PIN as a reminder arrived in the post but of course she didn't know how to peel off and reveal the PIN. I asked if he wanted me to help, he said no but then just left her with the letter! So I've ended up doing that too.
I'm finding it hard to balance looking after both people, involving my husband whilst recognising his limits.
I'm also autistic and an ADHDer so finding this communication, organisation etc stuff difficult too!
I guess that many of us are looking after ourselves and other loved ones as well as a person with dementia.

I find that you just have to be really careful at changing anything.… and companies just don’t understand how these things impact some people. They just assume that if this happens, they will know what to do/ how to navigate things. We all know this isn’t true and some people just can’t cope with change and don’t understand modern (or any) technology enough As an example, my mum was (and still is) constantly complaining that she can’t work her phone (an iPhone that I’ve very much simplified ) - we got her one of these really really simple phones and it just backfired. In the end we gave her , her old one back because we were at the point that she was going to throw her new phone through the window because she couldnt change TV channels with it She also uses really out dated sky equipment which despite repeated asks from Sky, I refuse to upgrade for the same reason. I now just try avoiding any change whatsoever even when things aren’t perfect.

 

[Skellei]

Just an update from me. I'm not sure that my mother in law has been remembering to eat or has the energy to make even a jam sandwich. Perhaps she's lost her confidence after the microwave near miss with the dry Cup a Soup powder.
My husband says that he's not enjoying visiting so I'm going to visit her more often separately so that she can have more attention from me as well as carers and home help.
And I'm going to find some more fun things for me to do to look after myself and get me through all this. I've been meaning to try a choir and a dancing group for a while, now is the time.

I know that I am now also answering my own posts but you really, really need to do these things for yourself. It is so important otherwise you life just becomes about caring about others. Also bear in mind, that if you ‘fail’ for whatever reason, who’s going to look after your husband/ mother in law then so it’s important that you protect your own health (mentally and physically).

 

[Skellei]

I know that I am now also answering my own posts but you really, really need to do these things for yourself. It is so important otherwise you life just becomes about caring about others. Also bear in mind, that if you ‘fail’ for whatever reason, who’s going to look after your husband/ mother in law then so it’s important that you protect your own health (mentally and physically).

… and the carers/ home help are really important as well. My mum ended up in hospital last year because she was forgetting to eat and when she did, it was basically toast. She ending up being dangerously short of potassium and other things and it took some time to stabilise her in hospital. my mum carers ensure that she is at least eating properly I hope this helps

 

[sheepfield]

Thank you for your replies @Skellei Yes, just over four years ago now I was really unwell with anxiety for months and I don't want to get back to that stage so caring for me is super important.
I hadn't thought about nutrition deficiencies, I'm not sure what the blood test later this week is trying to detect and if that kind of thing will come up.
The sensory team left a couple of new devices to try that might be louder etc but might not be so good for the confusion. I was thinking that when they left them, more evidence for the memory clinic perhaps.
I had the impression that my husband was confused by the new phone too. He certainly didn't seem on board with the plan to try it despite me telling him a couple of times about the trial.

 

[sheepfield]

It's so true about the equipment. I got a simple clock that tells today's date and my mother in law still asks every 5 minutes what the date is. She is now forgetting how to operate familiar things like her radio and television. And my husband was getting a bit frustrated yesterday about the television. I had to leave the room and leave them to it, looking after myself.