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At my wits end.

Discussion in 'Middle - later stages of dementia' started by Swoozy, Feb 14, 2017.

  1. Swoozy

    Swoozy Registered User

    Nov 6, 2016
    I've posted before when I needed to rant and it kind of helped so here I go again.

    Mom has vascular dementia and Alzheimer's. Along with a whole host of other illnesses including depression. She's in mid stages but to look at her you wouldn't think there's any thing wrong. It's so frustrating when meeting new people or old friends even family (who think I'm lying about the results).

    Daily she sleeps a lot. I have to wake her around 11 for insulin and food. Her doctor said the sleeping isn't part of dementia. She has to have three meals because of insulin injections which is our main daily argument she always says she doesn't want to eat unless it's sugar, cakes, puddings, buiscuts etc.. all of which she can't have along with alcohol.

    She complains that I control her life. I admit I do but when she would put herself into a diabetic coma within a day I feel I have to.

    I hate looking after her. I want my life back. She goes to a group on a thursday but she doesn't want to go and it's a battle to get her there ( with my siblings telling her she doesn't have to go ). It's the only break I get.

    I have a husband and he's great but he can't cope with her as she gets worse and i know he wants me to put her in a home. But I can't she wouldn't agree to go it's her worst fear.

    Last night I had to stand in the middle of her and my daughter (17 year old who mom hates since being ill) because mom wanted to hit her. I had to push mom away. It's heart breaking to see.

    No one sees the stubborn argumentative moody person that we get on a daily basis.

    Physically apart from the sleeping she's quite mobile. But she can't cook for herself or wash clothes, she has no idea what medication she has to have unless it's in her boxes, that kind of thing.

    I want a happy home once more I want my mom back.
  2. Slugsta

    Slugsta Registered User

    Hi Swoozy,

    What a horrible time you are having! :(

    Many people have posted here saying that they 'can't' move their PWD (person with dementia) into residential home. Some do manage to keep them in their own home until the end. Many others have to let someone else take over the physical burden of caring because the PWD's needs are such that they can no longer be met at home.

    Your mother is no longer the person who didn't want to go into a 'home', that part of her has been destroyed by the dementia. Despite your best efforts, it might be that the time has come to think about residential care - especially if physical violence has become part of your mums dementia symptoms :(
  3. Swoozy

    Swoozy Registered User

    Nov 6, 2016
    I wouldn't even know how to start such a process x
  4. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Swoozy - it's not you putting your Mom into a home - it's dementia (if that is the outcome). That's the first thing you need to take on board!

    It really sounds as if your situation is untenable as it is. You have said that you hate looking after her and I'm not surprised. Your relationship with your husband is suffering, your daughter's life is being adversely affected and you are miserable.

    There are not many people who turn round and say that they want to move into a care home environment but sometimes it's the only or best option, for all concerned.

    If your Mom's self-funding then you can simply go ahead and start looking for a CH. You can do that now. In fact I suggest you do it anyway, to find out what's available. Find one you think will suit your Mom, put her on the waiting list. They will most likely want to assess your Mom to see if they can meet her needs.

    If your Mom's not self-funding then you need to contact adult social services and get the ball rolling with their assessments.

    Whether your Mom's self-funding or not, you can request assessments both for your Mom and for you to ascertain both your care support needs. A break of one day a week is not enough.

    If your Mom does move into care, it's NOT the end of the world. You're not a failure and nobody will think any the less of you. If siblings kick up then tell them to care for your Mom long term! There are many of us on here who tried to avoid the CH route but for whom it has ultimately worked out well. And you will get your life back x
  5. blue skies

    blue skies Registered User

    Sep 18, 2015
    I know how you feel

    I know how you feel, sending you lots of hugs.

    It seems that your Mother has wonderful Hostess mode as they call it, to all outsiders she is just normal, but remember you know her best. They also say that they target someone close to them.
    Sadly things will never be the same, but we have to take each day as it comes and enjoy the days that are bright, it feels that you take 4 steps forward and 10 steps back.
    Rant and rave as much as you like as you will always have support from here.

    I have a mother who is 83 , she like your mum is excellent at hostess mode and can for a short while hold a good conversation before it becomes repetitive !!!,she also wears 6 watches, various too many rings and necklaces but hey, if she wishes to wear them I let her, its just she keeps over winding the watches, so the jewellers is kept busy. !!! My Mother has auditory hallucinations whether or not I'm at home at work or away, she thinks that I run a brothel !!! so count your lucky stars. I too have an 18 year old daughter who finds all of this unsettling to say the least, we try our best but as Mother puts it I've heard with my own ears so it must be true !!! and no denying it dos the trick.
    Like you mum she doesn't eat a lot I suspect and I keep finding tablets in the carpet which when pointed out she then throws and then states I don't need it !!!
    As my mum is up at night walking she must cat nap in the day but says that she doesn't but hey I don't mind, as for support I have little, my brother lives far away rarely visits and speaks every blue moon. My son lives abroad and daughter is in her 1st year at Uni, so its down to good old me.
    So rant away and I will join you if I may.
    Here if you need me.
  6. Swoozy

    Swoozy Registered User

    Nov 6, 2016
    Thank you to the ones replying. X

    Mom wouldn't be self funding and I'm still waiting for social services to come and see about funding for the one day a week at the group.

    I love my mom and right here right now I can't see a reason I would put her In a home but in 10 mins we start the lunch battle and in 3 hours the children will be home and the battles really do start.

    She won't even discuss power of attorney so even medical and money are a battle.

    I crave a relationship that my siblings have. The nice twice a year out for a meal and no responsibilities. . Not that I could ever be hands off I love her far too much for that.
  7. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hi Swoozy
    this post is in response to
    and I appreciate I'm taking your words slightly out of context - and that these are just my thoughts, so feel free to ignore
    reasons =
    husband - he can't cope with her as she gets worse
    daughter - 17 year old who mom hates since being ill (by the way, 'push' the daughter, she's more likely to bounce than your mum)
    the children - will be home and the battles really do start
    mother - would put herself into a diabetic coma within a day
    siblings - telling her she doesn't have to go + I crave a relationship that my siblings have
    YOU - I hate looking after her
    YOU - I want my life back

    maybe it's time to seriously consider how the needs & wants of ONE person outweigh the needs and wishes of 4+ others

    as Hilly Billy says, the reason your mum needs the 24 hour a day support that YOU are currently providing = dementia + other health issues
    you will not be PUTTING your mum in a home - your whole family currently are putting up with her in theirs
    what you will do is your very best to find the right environment for her where she is supported all day every day by a team of carers, working with and monitored carefully by you, so that her needs are met - you will move her into a new home and visit regularly as her caring daughter because you love her (almost far too much)

    sadly this isn't going to happen
    maybe this can
    I'm not saying that such a move has to be NOW - and I'm glad you are in contact with SS, but they will allow you to provide all the care your mum requires as long as you are still on your feet to do it - seems to me that you need far more than an agreement to fund an extra day's day care - and I do appreciate that home care visits are tricky when dealing with a multi-generational household - make sure SS have a clear picture of how much you are doing and keep them up to date - otherwise you will hit carer breakdown and a crisis

    best wishes to you all
  8. Swoozy

    Swoozy Registered User

    Nov 6, 2016
    Thank you x.

    I guess I knew all those reasons were valid but I see it as my job.

    Today I found miniture bottles of whisky in her bin, siblings have obviously given her. No wonder I've been having such a hard time with her lately.

    After a heated debate which I knew was pointless. Mom told me she wants to leave. Unfortunately she think she can just go rent a house somewhere and live alone. My son asked if she knew her PIN number to get some money out of the bank. Obviously she replied no. She is refusing to eat luckily my brother happened to be here.( he's the favourite) he asked her and reminded her she had to eat so she's let me cook for her.

    I'm tired of it but I love her so much.

    How would I get her in a home when she would refuse to go though ?

    I couldn't push daughter there was no where to push her she was pinned up a wall.
  9. missmole

    missmole Registered User

    Feb 16, 2017
    my heart goes out to you!

    Hi Swoozy

    Dementia has to be one of the most cruel diseases around. There is so much guilt too, especially when it involves our parents. I agree with many of the others. You really do have to think about your marriage, your 17 year old (who may well be off soon doing her own thing so you want to be able to enjoy her and be able to give her time while she is still at home) and you. This situation will be affecting your health and mood - which means you will be no help to anyone if you are stressed/exhausted/angry etc etc.

    I know this because my mother has dementia and so did my father in law. It will only get worse sadly and you will end up despising your mother (if you don't already some of the time!) if you continue like this. Firstly, have a break from the situation - it will help you see clearly. Visit your GP (assuming you can get an appointment LOL!) and don't pretend it's all going well. Have a good cry! Remember, the person you see now is not your mother of old. Sadly she has been taken over by dementia.

    I would strongly recommend doing the Lasting Power of Attorney - it is extremely complicated further down the line if you don't. I did it myself rather than involve solicitors which would have stressed my mother out. Obviously she had to sign everything but you can complete the forms yourself using the guidance notes.

    It sounds horrible, but I have had to learn to switch off my emotions a bit. I love my mum and would give anything to have her back but that's not going to happen, obviously. The dementia means I find it unbelievably stressful dealing with her - she has always been stubborn and is now impossible. But, it is what it is. You must consider ALL your family and yourself too. I really hope you manage to find a way to deal with your situation.
  10. Hill Man

    Hill Man Registered User

    Apr 10, 2016
    Mid Wales
    Hi Swoozy

    I think we all recognize the terrible dilemma that you face. All I would say is to remember that objectively speaking your mum is already in a care home - and its one with only one member of staff who works 24/7 without a break, holidays or support. Add to that other residents who would really like her gone. At some stage you are going to have to ask - is it really in her interests to live with a single, frazzled, resentful carer?

    No one would expect you to do your own heart surgery or give your mum chemotherapy on the kitchen table - dementia is a disease - no shame in needing professional help or a professional care setting

    Social services always take forever anyway so getting them involved now has to be a good thing
  11. Swoozy

    Swoozy Registered User

    Nov 6, 2016
    Thank you

    She is refusing power of attorney even though she's happy for me to manage all of her money and health issues.

    She isn't even speaking to me today but at least it's quiet lol.

    I have fibromyalgia and M.E I just want to sleep. Her symptoms are not good for mine.
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    For heavens sake, how are you doing all that with ME?
    I know you said she won't go into a care home, but if you get the phraseology right, she will go.
    Would you be prepared to have carers breakdown? Or any other illness? I can tell you, no. I've been there, done that. It's not funny. Plus OH was one of the gentlest people around, except when in the throes of hallucinations/ delusions. You've (maybe) got that to come!
    Your whole family is falling to pieces, you have to get things sorted. It looks like that can only happen if mum goes into a care home. It won't be you that's put her there, it's dementia, so don't get fret about that!
    Over the years, I think, it's kids first, hubby next, parental generation last.
    Have you read any of So Bizarre, AnnMacs thread? It's worth a read! Just stick to her postings, it's too long to read right through!!
  13. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    #13 Linbrusco, Feb 17, 2017
    Last edited: Feb 17, 2017
    Swoozy, despite the fact I live in another country, dementia is dementia.
    My Mum was diagnosed with Alzheimers in 2013. Prior to this diagnosed with Chronic Lymphocytic Leukemia, and had had surgery for early stage bowel cancer.
    My parents lived behind me, but I was Mums main carer, and then coping with Dad caring for Mum.
    No one, not Mums siblings or even my own siblings saw the half of it.
    Mum was quite with it in social situations, although repetitive in what she said at times.
    One of Mum sisters said she didnt have Alzheimers and was faking it :mad:

    Thankfully I had no health issues of my own, but caring to a lesser degree dor my husband who has neurological deficits due to surgery and treatment for a brain tumour, and a teen daughter with anxiety issues, ( cant help wonder because of what was happening at home) and a teen son in between having two knee surgerys.

    January of last year, saw Mum with repeat UTI's, increasing bizarre behaviour, trips to her GP, and a trip to hospital, me being called home from work, as Dad had left her at home on her own, and she wanted to go look for him.
    I was spending more and more time looking after Mum, and my family was being neglected, all at the same time my daughter was having a rough time at school, not wanting to go, and I felt quite torn.

    After coming down with shingles March last year, the mention of Respite care to my sister, was met with " My Mother is not going into care and we have to come up with solutions" .
    To appease her, we tried extra carers during the day, and increasing Mums days at a daycare, which wasn't working. Mum resisted the carer, but at the same time, on the days she wasnt at daycare getting dressed at 4am ready to go, and caused a great deal of arguments between her and Dad.

    The last straw was my husband with a gastrointestinal tumour and needing surgery.
    How was I going to cope with both? especially if the tumour was malignant!
    Sister agreed to Respite care for Mum. We checked out several places, chose one we liked.
    Mum went into Respite care on the pretence that because she hadnt been well her GP wanted her to have a break, and for the nursing staff to take care of her, and to get some good food into her. ( helped that Dads cooking was pretty awful :rolleyes:)
    We were offered a placement, and Mum never came out of Respite. There is no way Mum would have agreed to it, but her poor memory means she thinks she has only been there a matter of days.m
    It has now been 7 months, and although Mum can have good days and the odd bad day, on the whole it has been the best thing ever.
    Her physical health has been so much better, and not one UTI in 7 months.

    Thankfully my husbands tumour was benign and, for the first month after Mum went into care, I slept soundly for the first time in about 5 yrs of caring for Mum. On weeknds I was sleeping in until 8am... unheard of for me.
    At some point, you will have to and need to put yourself, and your health, and your family first....
  14. la lucia

    la lucia Registered User

    Jul 3, 2011
    Can you enlist a family friend/neighbour to be both the witness and help explain? We did this when my mother refused. I asked mum's neighbour who knew her well.

    We didn't really go on about it much in advance just a basic explanation but we turned the actual signing into a wee living room ceremony almost....

    The neighbour explained to mum that the forms were about if she got hit by a car or had a sudden heart attack so we could legally express mum's wishes which would be written down. We also repeatedly said they were for the 'future'....

    Mum wasn't so sure at first but was less negative because of the presence of the neighbour.

    We read her each bit of the form and the attorneys offered to leave the room and I was totally on edge about the entire thing because she was liable to explode....

    Then we got to the sustaining treatment section that has to be signed separately and much to everyones surprise she suddenly got on her soapbox and started ranting about the immorality of people who keep relatives alive unnecessarily..... It was the last thing any of us expected.

    Needless to say both POAs are in the bag for which I have given thanks repeatedly. A month later she had a major stroke..... Without the POAs life would be really tough. I've used both several times.

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