Feel overwhelmed exhausted and isolated and tearful all the time

Discussion in 'I care for a person with dementia' started by wonderfulmum, Jun 7, 2019.

  1. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    Hi I have a mum with vascular dementia. It's so so hard and I feel so isolated so alone. It's difficult and although I contact agencies I get mainly passed other numbers and it's exhausting. Mum has taken over my life and I'm stuck in this experience and as much as I love my mum she is fiercely holding onto her independence and constantly repeating til my head feels like it will explode. I'm feeling do sad and sorry for myself too
     
  2. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60

    Well if it helps, I have just slammed my front door so hard out of frustration, the window almost fell out!

    My mum has Vascular Dementia too and I am principal carer living next door. I moved up from London six and a half years ago to care for her never thinking I’d still be here all of this time later. Her decline is so gradual
    (diagnosed in 2007) that I sometimes think I’m stuck here for eternity. I have no life of my own and every day is the same, just a checklist of things to do and times I have to do certain things by. She has a friend who is 95 who I have to cart around too and I feel completely taken for granted. There is no chance of using carers due to her anxiety levels. We are just waiting for her to need residential care ( my brother would do this now) but each time I consider it, I think about how appalling she will feel and how badly she will react and I just can’t do it. So the nightmare goes on.

    Each year I say “This time next year I’ll be back in London” and each year comes and goes and I am stuck in this never ending loop of caring for her and ignoring my own needs.

    So you are not alone! But that doesn’t really help does it?

    There are people on here much more conversant with social services etc than I but I would suggest phoning the Alzheimer’s Society helpline and downloading a bit - they will be able to give you some ideas and it will help just to actually talk to someone who understands.

    I wish you some peace and resolution to this awful situation. I wish the same for myself too.
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    536
    Male
    North West
    I confer with both of you. But here we are. When we have unconditional love for a person it makes it even harder.

    I have slammed the backdoor too, luckily there's no glass in it :rolleyes:
     
  4. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    Thank you although I wouldn't wish this on anyone I feel better knowing I'm not alone. When I do catch up with a friend occasionally I try not to mention my life in fear if losing them. Instead I listen to them talk about upcoming holidays with family and days out and trivial but enjoyable lives they lead. I go home and I'm back to the overwhelming stress. I love my mum but people are talking about her now and some getting fed up because they can't deal with her repeating but I can't keep her away from them to protect her because she doesn't believe me. She is still able to catch bus so she kicks up a fuss if I try to deter her. I am going to my mindful class shortly.. I need it today and everyday
     
  5. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    437
    @wonderfulmum, no you are not alone. I'm shortly off to visit my mother in her care home, where she will probably shout at me for being a horrible daughter for 'putting' her there, because she is perfectly fine, and doesn't have dementia.
    It' so tricky when they don't realise the effect their behaviour is having. Mum's main hatred of the home is she isn't allowed out, but when she was at home she was putting herself in danger drinking with random men in the pub, and when not doing up was striking up conversations with all and sundry that she met. It was only going to be a matter of time before someone took advantage.
    As my dear mother-in law always says 'look after you.'
     
  6. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    972
    It sounds to me that you are not getting some well earned rest from this situation. Why do you think you mum will react so badly to a care home? If you are going to wait for a person with dementia to agree with you about a home you will wait forever. The default answer is always going to be no. So when will she be ready as you say you are waiting for her to need residential care. What's your tipping point? If your mum is self funding, you could organise some respite care ,see how it pans out for her,plus give yourself some space. There's going to come a point when her needs outweigh her wants.
     
  7. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60

    I know full well what you mean. I can be sitting with Mum drinking her millionth cup of tea, saying over and over again that the sky looks blue ( to be accurate “ the top is a nice Colour”) and I see someone from over the road get into their car and drive away, probably on some mundane errand and I envy them. I can’t imagine just deciding to go somewhere without a mammoth logistical jigsaw puzzle being put in place or just being in the car on my own for 10 minutes. The thought of looking forward to something ever again is quite unimaginable.

    I don’t know how this will end up but I know that there are days and nights of trauma and stress between now and then and it’s sometimes difficult to go on.

    Mum know there’s something wrong with her but we’ve never actually used the word dementia to her, not that she’d know what it means now. We just say that she takes after her mum who had vascular dementia too. But we get all of the usual denials and temper tantrums if she feels challenged. You and I are going through the same thing. Same but different.

    See your friends when you can and if they really are friends they will be there for you to download to for a short while before going on to more enjoyable topics. Enjoy the little bit of respite and tell yourself one day it will be over and your life will be your own again. Come on here and have a rant, you are among friends. Do anything and everything to keep your sanity. Good luck.
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,493
    Female
    I'm sure we all feel the same about a care home, it is such a difficult decision to take. But we aren't necessarily right. My mother moved to a care home 15 months ago, I thought at the time I had made the decision a bit early, but it soon became evident that I hadn't. I didn't know if she would accept/tolerate/like it, but as it turned out she was much happier than she had been latterly in the flat she'd lived in for 40 years. She likes having constant company from a variety of people who don't mind if she wanders around at unsocial hours, and she feels safe there. Our own feelings can make us delay the move to a care home - we think it's a last resort and a terrible prospect, but our PWD may feel much more positive about it.
     
  9. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60
    Mum isn’t aware that she has dementia per se although she knows that she isn’t well. Before all of this started she made it very clear that she did not want to ever go into a care home, quite vehemently so, In truth, the type of home that she feared, well we’ve seen a few of those in our research and there is no way on this green earth that I would consign my mother to one of those places. We have found a very nice, purpose built home in town that is more like a hotel. It has excellent reviews and we’ve been there three times and each time have been impressed with the set up. And I know it’s coming even if she doesn’t.

    But ... but ...

    No matter how good the care workers are, they won’t be able to give her the one-on-one care that I do. How will they know when her hearing aid batteries need changing? Will they understand that through her deafness and macular degeneration (registered blind) that unless great attention to her is given she will have profound sensory deprivation? Yes they have “snack stations” but even if she could see them she would never dare help herself, so will she get the tiny things that make her life a little bit more bearable if I am not there to provide them? Etc etc etc on and on. She is shy and doesn’t want to be a nuisance and I can just see multiple situations in which she is lost, confused, anxious perhaps even terrified and she won’t be able to express herself to get the help and support she needs. The very thought of my Mum being bewildered and frightened even for a few weeks by something that I’ve done to her is more than I can bear.

    She has good days in which you wouldn’t think that there was anything wrong with her, of course there is the forgetfulness and not being able to take much in but she isn’t anxious. On those days I think this is going to go on for years yet (she is 92, physically quite robust, takes only one tablet per day) and the thought of taking her away from her beloved conservatory is unimaginable. On other days, she’s frail and very confused and can wander and I think she won’t last much longer and if she’s not going to then why put her through the trauma of rehoming her.

    Everyone we’ve spoken to at the AS, the care homes, the GPs and even the police (bringing her back from her two early morning wanders) have said that placing her in care with have a substantial negative impact on her condition - can I be responsible for that?

    I do see the security aspect and the cleanliness aspect ( she still tries to do her own housework and doesn’t like my interference in how she runs her home) will be great positives. But I look around this lovely facility and just see elderly people sitting in chairs staring vacantly into space and I cannot see her being happy there.

    A long reply but thank you for asking me the question as it has made me actually think about why I have this sense of despair about the care home situation. I don’t think I am reacting any differently to 95% of people in this situation, we all go through it but when all is said and done, this is my Mum we are talking about and If it it’s her welfare or mine that matters most, it’s hers.

    Knowing I could end the responsibility and stress and having no life and general frustration by committing her to care is very tempting but I just cannot do it yet.
     
  10. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60
    Too early - tick, last resort - tick, terrible prospect - tick.

    Thanks Sirena, you have given me a lot to think about there.
     
  11. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,493
    Female
    Just wanted to add something, having seen your subsequent post.

    I thought along the same lines. I didn't do the hands-on care, but I arranged carers and my mother had 6 hours of daily one-on-one care with a couple of regular carers she knew well. I thought she would really struggle to adapt to the lack of one-on-one, and also to being in an entirely alien environment, living with 40 other residents and carers.

    But actually, it works absolutely fine. She doesn't have one on one, but she does have multiple kind carers always on hand who are trained to notice when she needs something any time of the day or night. They aren't tired or stressed, because it's a job and they get to go home and return refreshed. The carers talk about her in affectionate terms and the manager told me recently that she brings joy to their days - they genuinely care about her.

    And of course you would still visit so your role would continue, and you could have all the input you want. My view of care homes has been transformed by my experience over the last year, and if/when the time comes I hope you have an equally positive experience.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,225
    Female
    South coast
    My mum made it very clear that she didnt want to go into a care home and she fought tooth and nail against going. In the end there was no choice. She was living in a filthy home, didnt wash or change her clothes, she had become quite paranoid and wasnt eating or drinking - when she was taken into hospital with a TIA she was found to be dehydrated and malnourished. Eventually she was wandering outside during the night wearing only an unfastened dressing gown. Where was the dignity in that ? What had my lovely mum been reduced to to be living in those sort of circumstances?

    Once she was settled in the care home there was such a transformation. She was clean, nicely dressed, lost her paranoia, made friends, joined in the activities and laughed again. I will be forever grateful to the carers who made her life so much better and were genuinely fond of her - several of them came to her funeral. There was a lot of laughter there. Yet the place looked shabby, many of the residents were snoozing in their chairs and the ones with late stage dementia were staring into space. When I first saw it I could not imagine mum there, but it was just right for her. I think that one of the problems is that we look at such places and imagine ourselves, or the person that our relative once was, living there and not thinking about what they actually need now.
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    536
    Male
    North West
    #13 Palerider, Jun 8, 2019
    Last edited: Jun 8, 2019
    I'm in the same boat Rosalind297. But I know there will come a point when a care home will have to take over. It does fill with me dread, but I'm getting used to the idea slowly and in some respects I wish it would just happen more quickly. Mum is very much now at the stage of wanting to stay indoors at home, which is a big change for her. When 'here' stops being home then that will be the point I think of making the difficult move to a home.

    Its difficult not to make value judgements, by imposing ourselves in how we think another may respond to change. I took mum to a care home recently for a walk round and to see the day care, when I saw mum in that situation she took to it and was soon chatting away, she forgot I'd left her for an hour. I took some comfort in that as well, knowing that if things came to a head she would be ok in a home.
     
  14. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    60

    It’s been a long slow decline for her as she had a stroke in 2007 and the MRI at that point detected the beginnings of vascular dementia. She enjoys little trips out and she likes to see and hear people and activities outside (as well as she can with little eye sight) but in truth she doesn’t seem to go too far from home these days. I see her a LOT during the day, my brother comes and sits with her most afternoons and we have her old companion that comes for elevenses and for a few hours in the evening so she has plenty of company - I just don’t know what to do for the best. My brother and I have decided to keep her here during the summer and take a view in the autumn as she gets very depressed and even more confused during dark winter days. That will probably be the trigger point. Anyway we will try a few weeks “holiday” style respite and see how it goes. Will be the worst day of my life.

    Good luck to your lovely Mum if and when the transition comes. And best wishes to you for trying to do the right thing for her and dealing with the awfulness. I am pleased that I have no children to inflict this trauma on if it comes to me.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    536
    Male
    North West
    Thank you

    I think by the end of summer mum will be moving too.

    Best wishes to you also :)
     
  16. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    My mum too craves company as she's always socialised and helped people wherever she could and so she will ring around to see whose free to spend and afternoon with. Most people now make excuses and it's heartbreaking to watch and hear her say " I need to go somewhere I can't stay in but everyone is busy". She wants to be with people her own age and not go out anywhere with me. It's raining so it's going to be a hard day today. Wish my family would help more but as soon as I say it's been hard or complain at all my sis says maybe we should put her in a home if you can't cope but I know she's not ready for that yet. Breathe breathe breathe let's go!
     
  17. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    972
    The home will know when to change hearing aid batteries, it'll be in the care plan. They've seen it all before. My mother-in-law had this problem, the carers changed them regularly.

    What has been mentioned before on this forum, is that often the relationship between the family members who were caring and the person in the home changes. My husband was full of resentment about having to deal with his mother . Once she was in the home that resentment disappeared he was no longer her carer he became her son again. He felt relieved that they were professionals who could deal with his mother 24/7 the worry lifted from him and he became a happier person. That's not to say that he was not involved with what happened to his mother in the care home. He took an active interest even though his feelings towards his mother had been whilst she was in her own home bitter and angry.
     
  18. Kittycatsam

    Kittycatsam Registered User

    Jun 13, 2019
    16
     

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