My Introduction

[minidoe]

Hi all,

I'm here because my mum and I have found ourselves thrust into a situation whereby we have no option but to accept the duty of care for my grandma (her mother) as she succumbs more and more to her vascular dementia. We want to help her of course, but the fact there's no one else to lighten the workload has made us feel helpless, our lives overrun by the unending string of problems in front of us. We barely have lives of own now and it's a constant balancing act to try to take the pressure off each other, lest one of us have a mental breakdown (which does still happen sadly).

I'm 23, and my mum's always saying that this is an incredible burden to bear for someone my age. She makes a good point that she has more places to turn, as she has several friends who are or have been carers, while I at my age find confiding in my friends difficult. They want to help, but none of them have experienced anything like what I'm going through, so that only gets me so far. So, her and a friend of hers suggested that I look for support online, anywhere I might be able to go to hear others' experiences and advice on this matter.

I very much appreciate any interactions I may get, as any little bit of support means the world to me. If anyone has any questions or would like to share their experiences, I'm happy to discuss it. Thanks.

 

[CAL Y]

@minidoe . I’m so sorry that you are experiencing this at such a young age. It must be difficult for you not to have people of your own age to confide in.
Please keep logging on to the forum where you should find support and plenty of useful information.

 

[Quite contrary]

Hi @minidoe
I agree with your mum that it is indeed an incredible burden on someone of your age to care for someone with dementia, even though you are sharing that with your mum. My son is 24 and we live with his dad (my husband) who was diagnosed with Alzheimer's 3-4 years ago. Tell us a bit more about your grandma - how long since her diagnosis, who she lives with, what she is like. Also, ask any questions that you may have.

 

[nellbelles]

Hi @minidoe welcome to DTP please try not to over think the caring my husbands great grandson helped me care for his Grandpops. Give yourself plenty of breaks and try to remember the good times you will hopefully find you are stronger than you think.
Now you have found the forum I hope you will continue to post for support and to share your experiences.

 

[Violet Jane]

Do you have any outside help / time off at all in the form of carers coming in, a sitting service which gives you and your mother a break, day centre visits, respite care? If not, then I think that you should investigate these as you and your mother sound under a great deal of strain. Has your grandmother had a needs assessment and have you and your mother had carers assessments?

 

[minidoe]

Hi @minidoe
I agree with your mum that it is indeed an incredible burden on someone of your age to care for someone with dementia, even though you are sharing that with your mum. My son is 24 and we live with his dad (my husband) who was diagnosed with Alzheimer's 3-4 years ago. Tell us a bit more about your grandma - how long since her diagnosis, who she lives with, what she is like. Also, ask any questions that you may have.

Thanks a lot for your reply (and that goes for everyone who has).

My grandma was only diagnosed a couple of months ago, but her condition was pretty clear to us from around March. She's had such a steep decline this year, I think in part the stress of lockdown catching up with her. She lives on her own and has done for the past 9 years, since her partner passed away, but at this point she no longer understands that and often phones us asking why she's alone. She was incredibly independent until March 2020, going on a bus into town every Wednesday to do shopping, meeting a friend there, keeping track of bills and going into her bank to transfer money, writing regularly to a pen friend in Australia... The only help she needed from us was driving her to places and doing a few strenuous chores. For a 91 year-old, she was incredible. She was a very "analogue" person, still viewing VHS tapes as complicated and modern. She liked her soap operas, her cats and doing crosswords in the paper.

The lockdowns in 2020 seemed to put her into a depression, as she became acutely aware of being alone, despite us phoning her 3 times a day. By the end of the year, she'd lost interest in any hobbies; she used to never miss an episode of Coronation Street and Emmerdale, but wouldn't watch them at all anymore. I suspect that lack of something to keep her mind occupied may have sped up her decline. We tried to urge her to pick up a hobby, but she rejected everything. Fast-forward to now, and her only real interests are her cat, who she overfeeds and becomes distressed over when she thinks she hasn't enough food for (she usually has but doesn't notice it) and having constant company.

She's unfortunately very demanding of our time now and will often phone us in a depressive state to tell us she's lonely and nobody cares about her, even if we've been with her all day and have only just left. We've trialed her staying with us, but it just wouldn't be sustainable as she wants someone by her side constantly and becomes distressed if no one is. We'd have even less of a life than we do now. I'm considering staying with her a few nights a week, but I don't know how much that would improve her wellbeing. She just doesn't seem to be happy no matter how much we do for her and it's really upsetting. In the old days she wanted to be alone, but I think dementia has made her more childlike.

Things are slightly better than they were; she had a cataract operation a few weeks back so we've been able to get Steps carers in to support her. We've been trying fruitlessly for a long time to get carers for her, and this has provided a much-needed entry point. I'm told they'll have to make sure she has the necessary care in place before they can discontinue their work with her. We still get frequent calls from her, but the carers' visits have meant we don't have to go every single day as we did.

There's plenty more I could elaborate on, but I've already gone on a lot so I'll wrap up there. Thanks for your interest.

 

[Bunpoots]

Hi @minidoe

My daughters were about your age when I fell into becoming the soul carer for my dad, who also lived alone. We didn’t have lockdown to deal with but dad would tell the neighbours he never got any visitors even when we were standing on the drive with him!

Dad wouldn’t go to any day centres, which would’ve made things a little easier for us, so most of his care and company fell to us. I did the lion’s share of it and it was emotionally exhausting and very stressful. I wish I’d put more care in place sooner as it made things much easier - I could visit once a day instead of everyday and seldom had to ask my kids to step in.

In the later stages of dementia my dad certainly became more and more childlike and un-cooperative and difficult to look after. I suspect, from what you’ve said, that your grandma may need full time care very soon. I decided my dad needed a carehome when he no longer recognised his own home.

 

[Quite contrary]

Good morning @minidoe
I can understand your grandma getting worse during the past 18 months with the lockdowns. I suffer with varying degrees of anxiety and depression but am normally very independent, and like your grandma going out and about every day, meeting people, managing the household and finances, doing exercise classes, sodukus in the paper. However, when the pandemic started I had a panic attack in the supermarket and everywhere and everything became frightening. I found myself relying heavily on my daughter to take me shopping. Your grandma would have had the added difficulty of poor eyesight due to her cataracts.

It is so good that grandma is having carers since her operation and that really needs to continue once STEPS comes to an end. You and your mum must be careful to make sure that that it is not the two of you who take over that care as care needs will increase as time goes on.

Since diagnosis, my husband needs me with him all the time, he is like my shadow, even if I just go to the kitchen or upstairs he needs me to tell him and check in with him or he "loses" me! He also forgets when someone has phoned or visited or when he has been somewhere, so as far as he is concerned he never goes out, does anything, sees anyone. Also, on the rare times I go out without him he feels I have been gone much longer than I have and rings me feeling agitated, even if our son is at home - he is usually in his room, so as far as hubby is concerned son is out of sight and therefore not there!

You obviously love and care for your grandma very much but please try not to take on any more than you were doing before her diagnosis.

 

[ClaireeW]

Hi @minidoe So sorry to hear about your situation, especially as you are so young. Aside from my Mum being 86 and not 91, they could be twins! Almost identical story. Lives alone, previously very independent. Then lockdown. Cataract op in August (never heard of STEPS, that may have been helpful!). Now telephone calls constantly, lonely, crying, depressed. Only wants me.
all so very sad ?
As she no longer recognises her home as her own, for much of the day, I'm now sadly looking for a care placement for her. At least there'll be people around to reassure her.