At my wits' end.

[Frazzled123]

Hi

I am at my wits end.

I started looking after my mum in July. She relocated to move in with myself and my family as she could no longer cope st home. She knew no one in the area so has obviously been dependent on me for any sort of social interaction. I take her out to different activities but to be honest her dementia is so advanced now that socialising requires 100% effort on the part of the other person as she no longer has the ability to ask anyone anything about themselves, she can only now see things from her own point of view.

This I dont mind, but the constant need to have attention from me is utterly exhausting. Even when I am sat in the room with her, if I am sitting quietly, she will call my name in a panic every minute or so. She just wants reassurance. I have to take her everywhere with me as she cant be left.

I have 3 children and she constantly competes with them for attention. If I'm having a conversation with one of them she can't stand it and has to interrupt the conversation.

Recently I had to take her to parents evening as she couldn't be left home alone, whilst I was talking to the teacher she constantly interrupted asking if we could go.

I am up a lot in the night with her due to to double incontinence, which I dont mind but is obviously very tiring. The other day I was so exhausted I really needed a quick nap for a few minutes before collecting the kids from school. I explained how tired I was and that I really needed this nap. She repeatedly kept on waking me as she couldn't stand my attention to not be on her.

Full time care is not an option. She went to respite for a week recently but phoned me in tears telling me she wanted me.ever since she's been back she keeps telling me how she really didn't like being away from us, though we will definitely have to do again soon.

The first day she went in I was still constantly hearing her calling my name. I am exhausted from this.

She is now too far gone to be able to engage in any activity by herself without help so it's very difficult to get her going with something distracting. She's even unable to turn tv on or change channel.

I should add that my husband is very helpful and supportive but he is at work during the week and it's me she's really latched on to.

Sorry for long rant, just needed to get off my chest.

 

[Rosalind297]

Full time care is not an option. She went to respite for a week recently but phoned me in tears telling me she wanted me.ever since she's been back she keeps telling me how she really didn't like being away from us, though we will definitely have to do again soon.

The first day she went in I was still constantly hearing her calling my name. I am exhausted from this.


Sorry for long rant, just needed to get off my chest.

Oh you poor thing - I don’t have it anywhere as bad as this but I am tracked down very regularly and always get a slightly sarcastic “have you been somewhere nice?” if I am out of her sight for an hour or so which does getting annoying as I’ve usually been doing her ironing or mowing her lawn.

What I wanted to ask is, was the one week’s respite her one and only experience of residential care? If it was then don’t give up - one week is nothing in the grand scheme of things. It can take a few weeks or even a few months for the PWD to settle. There will almost certainly come a time when you won’t be able to carry on this level of care and residential care will be the most likely solution so it’s good to say respite will have to happen again soon. As TP members often say, you have to disregard what the PWD wants and go with what they need.

This is definitely the place to get things off your chest, so no apology required!

 

[Jale]

Has your mum had an assessment done by social services to see what her needs are - perhaps give them a ring, you say your mum is incontinent, again has she been assessed by the incontinence clinic, although I think she has to be referred by her GP - I hope someone with more experience than me will come along with advice. Have you thought about carers coming in (although my mum never took to any of her carers), but it might give you a bit more time for yourself. If you have access to Admiral Nurses get in touch with them, (I think if you google them you will find contact number) they were a great help to me as they help the carer not the PWD, and even if a face to face visit isn't possible they may be able to help you and point you in the right direction.

Mum has been in the nursing home now for over 12 months, but every afternoon she continually calls for her son and nothing and no-one can distract her, so I can understand what you mean by your mum calling/wanting to be with you.

Good luck

 

[MaNaAk]

I think you need to at least get carers in and think about respite again pretty quickly because you have children as well. One week isn't long enough so I suggest at least a couple of weeks.

MaNaAk

 

[Palerider]

This was one of my concerns with mum who I placed into care this week. She constantly wanted me to be with her and always said she wanted me to go wherever she went. It got that way that I couldn't do anything without mum being by my side -cleaning the car, mowing the lawn, cooking the tea. It did concern me that my not being with her would affect her but it hasn't. I don't know the realtionship you have, but we have always been close, but even with that in the picture it was a hard thing to do placing mum into care knowing she may well be distressed by me not being there anymore. But she is ok and to be fair she is more advanced than I thought, but she has settled.

She couldn't turn the TV on by herself anymore, couldn't remember to eat when alone other than cake and chocolate and eventually starting get up at midnight and wandering round the house as well as things reaching crisis point a few weeks ago. I am new to the CH scenario myself, but maybe its worh trying respite again and seeing how she goes?

 

[Rosettastone57]

Hi

I am at my wits end.

I started looking after my mum in July. She relocated to move in with myself and my family as she could no longer cope st home. She knew no one in the area so has obviously been dependent on me for any sort of social interaction. I take her out to different activities but to be honest her dementia is so advanced now that socialising requires 100% effort on the part of the other person as she no longer has the ability to ask anyone anything about themselves, she can only now see things from her own point of view.

This I dont mind, but the constant need to have attention from me is utterly exhausting. Even when I am sat in the room with her, if I am sitting quietly, she will call my name in a panic every minute or so. She just wants reassurance. I have to take her everywhere with me as she cant be left.

I have 3 children and she constantly competes with them for attention. If I'm having a conversation with one of them she can't stand it and has to interrupt the conversation.

Recently I had to take her to parents evening as she couldn't be left home alone, whilst I was talking to the teacher she constantly interrupted asking if we could go.

I am up a lot in the night with her due to to double incontinence, which I dont mind but is obviously very tiring. The other day I was so exhausted I really needed a quick nap for a few minutes before collecting the kids from school. I explained how tired I was and that I really needed this nap. She repeatedly kept on waking me as she couldn't stand my attention to not be on her.

Full time care is not an option. She went to respite for a week recently but phoned me in tears telling me she wanted me.ever since she's been back she keeps telling me how she really didn't like being away from us, though we will definitely have to do again soon.

The first day she went in I was still constantly hearing her calling my name. I am exhausted from this.

She is now too far gone to be able to engage in any activity by herself without help so it's very difficult to get her going with something distracting. She's even unable to turn tv on or change channel.

I should add that my husband is very helpful and supportive but he is at work during the week and it's me she's really latched on to.

Sorry for long rant, just needed to get off my chest.

If you can't prioritize speaking about your children without your mum being involved then to be blunt, you've reached the point where her needs have outweighed what she wants. As others have said, organize carers, either via SS assessment, if possible or if your mum is self funding and you have POA for finances, then organize it yourself. I think you are just putting off the inevitable of residential care. You need to prioritize your own family

 

[DesperateofDevon]

If you can't prioritize speaking about your children without your mum being involved then to be blunt, you've reached the point where her needs have outweighed what she wants. As others have said, organize carers, either via SS assessment, if possible or if your mum is self funding and you have POA for finances, then organize it yourself. I think you are just putting off the inevitable of residential care. You need to prioritize your own family

I agree your children need you to be their mother again. Your Mum needs more than you can or are able to give.carers would help but really a Care home or day care is needed.

 

[canary]

One thing that puzzled me was this

She went to respite for a week recently but phoned me in tears telling me she wanted me.

How did she get hold of a phone?
Did she use the care home phone, or was she sent in with a mobile? Either way, giving her access to a phone sounds like a comforting idea, but in practise it merely reminds them of home and what she needs is distraction, not reminders.
When you take her for another period of respite ask the care home that she isnt given access to a phone. Actually, Im surprised that they allowed it - it makes me wonder whether it is the right place for her, because a care home that is used to dementia would understand that talking over the phone would not calm her down, but just make matters worse.

 

[Bunpoots]

Hello @Frazzled123 welcome to Dementia Talking Point.

I can imagine how you're feeling - torn between the needs of your children and your mother. We, my daughters and I, have spent the last 12/13 years immersed in dementia. Mostly my children were protected from it but over the last 3 years it's taken its toll. My girls are now young adults and our last PWD died almost a year ago. We're starting to recover but it's taken its toll!

I've told my children that if I get dementia and get to the anxious state your mum seems to have reached they are to find me a nice home that can look after me and keep me safe. Anxiety is a most difficult thing to deal with and it's too much for one person to cope with. Please think seriously about the best options for all of you. It's too easy to put the needs of the PWD above all else but they are only one person and the needs of the many should also be considered.

 

[father ted]

You take Mum to activities but have to stay with her in order to facilitate that she gets something from it?
You are up at night because she is awake/doubly incontinent?
She rings you from respite distressed because she wants you and only you?
And you don’t mind?

I understand the love and familial duty you feel toward your Mum but what of your very helpful and supportive hard working husband and your school age children? Don’t they deserve more too?
Full time care is not an option- why not?
Dementia has claimed her life don’t let it claim yours and that of your family. Get more regular respite and don’t answer the phone if it rings.

 

[Frazzled123]

Thanks everyone for your replies. I really appreciate it.

The reason full time care not an option at the moment is financial. My mum has a small house in another part of the country. When she moved to us she crossed to a different county council and this is where the problems have arisen. She has no savings but does have a house which is an asset which means that in my local authority you literally have to pay from day 1, you cant offset against house, which means means my husband and I would need to fund entirely. Her house will probably be on the market in the next 6 weeks but even so with time to find a buyer and then go through process of sale we are realistically talking about 6 months minimum We just dont have the funds to do that so am going to have to do for this period st least.

The phone was given to her by the care home. She cant work a phone any more. She asked them to call her daughter and I imagine she would have been quite relentless with it. She wasn't crying at the time she made the call, it started after a few minutes so I don't really blame the carer.

 

[Cat27]

I don’t think that can be right @Frazzled123

I think you’d really benefit from having a chat with our helpline



National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Frazzled123]

Thank you. I'll call tomorrow.