Feel so alone - need to offload

[JHA]

I am even doubting where to post this thread as I do not even feel like I care for someone with dementia I just feel like I have passed the buck and put my mom in a care home as I cannot keep her safe anywhere else.

Brief history mom lived alone - lewy body dementia diagnosed July 21 and following a crisis in December 21 moved into a care home. Care home is self funded. When she went into the care home she was on Rivastigmine and following difficult behaviour mental health prescribed Risperidone in April 22 and she seemed to settle down - not happy but safe. Fast forward to January 23 and the difficult behaviour returned so mental health increased the Risperidone and she has been on the increased dose for about 10 weeks. These last few weeks she has been very sleepy when I visit. On Tuesday morning she was laying in bed and would rouse for a few seconds then go back to sleep so I left and visited yesterday where again she was laying in bed did wake up but was not herself at all. The only other person who visits her is her cousin and following a conversation yesterday she too advised that my mom is always sleepy, nods or shakes her head at questions and just stares into space when she visits. My mom has three siblings none of them visit - the one I think cannot cope with how she has ended up, one lives the other end of the country and the third one is worried that she will not be met with open arms.

The home agreed yesterday to raise the question with mental health as to whether the increased dose of Risperidone is too high. I spoke to one of the carers yesterday and she seems to think it is the dementia getting worse.

I feel I am not doing enough I feel like I should be the one looking after her and I feel like the worlds worst daughter in the world at the moment. I just feel like I am waiting for the next disaster and feel like I take one step forward and about ten back. I am currently trying to sell moms bungalow (kept putting it off as once I sell that its final), my 14 year old son has autism and is out of school at the moment. I just feel like everyone wants a bit of me and I have nobody there for me - my mom would be my 'go to' but dementia took that away a long time ago as one of the first bits to go was empathy, my best friend died just over two years ago so I turn to a forum. Now this thread has now turned into a bit of a pity party.

My husband is asleep upstairs and I can guarantee that if he came downstairs and saw my tears he would just walk out of the room.

If you get this far thank you for reading. I am now going to make myself a cuppa, cuddle the dog then pull myself together as I want to visit mom again this morning to see how things are today.

 

[Violet Jane]

I'm sorry that you are feeling so low. You are certainly not the world's worst daughter. There comes a time when a PWD needs to be cared for by a team of people in a care home. I think that a lot of us feel helpless around dementia and particularly around medication, doubting whether it is helping and wondering whether it is making things worse. You have a lot on your plate with your son's Autism and difficulties with school, and I'm assuming from your comment about your husband that he isn't particularly supportive.

I think that you need to take a bit of a mental step back from your mother now so that you can concentrate on your son and your own wellbeing. It's sad that only one other person visits your mother but you shouldn't try to compensate for that by visiting more often. Sadly, it's common for family members and friends to drift away and then stop visiting at all.

 

[Izzy]

I too am sorry you’re feeling so low @JHA.

I wondered if you would find this useful -

Letting Go Without Giving Up.

Keep posting here I know you will get so much understanding and support.

 

[canary]

Hello @JHA - what you have written is not a pity party, it is the reality.
You are going through anticipatory grief. You have lost so much to dementia and are still losing more.

You have not been a bad daughter - you have looked after your mom and have made sure that she is being kept safe and looked after. A bad daughter would not have done this and simply wouldnt care.

You are still adjusting to the change in care. Yes, you are still a carer, but no longer responsible for the heavy, hands on stuff. you are overseeing her care, rather than providing it yourself. You are her advocate, her eyes and ears, her voice now that she has none and have already alerted the care home to the fact that she may be overdosed on risperidone.

Dont underestimate what you are doing
xx

 

[Grannie G]

Hello @JHA

So often there seems to be one person who takes full responsibility for caring for a family member while others can only make sympathetic noises.

Now your mother is in residential care, the care home is sharing that responsibility with you. Risperidone is a strong medication and the home is recognising this and trying to get the dose adjusted.

My husband was prescribed a similar medication and the dose was tweaked until it suited him best.

You know your mum is seriously ill and coming to terms with it is the biggest challenge you are likely to face. Along with other worries about your son and selling your mother`s bungalow, it`s not surprising your feelings are as they are.

Selling a mother`s home is traumatic, more so when mothers are still living. When I was clearing my mother`s home ready to sell I was looking over my shoulder all the time, expecting her to walk in and be dismayed and I can well understand you finding it so difficult to face.

my best friend died just over two years ago so I turn to a forum.

People on this forum have all experienced some of what you are experiencing and although the support is not face to face, it is as understanding and supportive of being a carer as anything or anyone can be.

I hope your visit today will be a little bit easier for you.

 

[Feeling unsupported]

This is certainly not self pity, you could have been writing my story. Every aspect of your post resonates with me. My mum is now in a very similar, sleepy, non-communicative state now (although not due to meds, it is just the stage that she has reached). The whole situation is just like carrying a permanent heavy load. I am the only regular visitor she has and so feel guilty that I do not visit more often than I do. I have now cleared and sold my mother's home, this was one of the most challenging things I have ever done too. As others have said, it feels so very wrong whilst they are still alive, as though you are doing so behind their back. I have found this forum so helpful, we all have many of the same feelings and challenges, as we try to support our loved ones with this terrible disease. Please know that you are not alone in this situation, you must take time for yourself, or you will end up unable to support either your son or your mum. Sending you a big hug xx