My Mum’s story – has anyone been in a similar situation?

Discussion in 'Middle - later stages of dementia' started by Emily M, Jan 21, 2015.

  1. Emily M

    Emily M Registered User

    Jan 20, 2015
    Has anyone else had an awkward family situation?
    Has anyone noticed similar deterioration with Risperidone?
    What can we expect in the future and how will the disease progress?

    My mother who is in her 80s was diagnosed with Alzheimer’s 18 months ago. The family had suspicions that she was getting more repetitive and losing her memory for up to a year before. When I offered to have a word with her doctor her husband (my step-father), who is a few years younger than her, said that he would do it, but did nothing. Finally I phoned her GP, managed to persuade Mum to attend the appointment and accompanied her. My mother would not accept that anything was wrong and refused to take any medication to slow the progress of the disease.

    Since then there has been a gradual deterioration, but lately this has become more rapid. It is difficult for any spouse but unfortunately her husband is not a natural carer so often got frustrated, impatient and shouted at her. They had terrible rows. With her condition the normal boundaries of what is right and wrong behaviour have broken down and she became quite violent, throwing things at him. She was prescribed Risperdone but I know he very rarely gave it to her at first. Social Services attempted to get her a few days respite but she refused to stay at the Home and became verbally aggressive. She also refused to go to the Day Care Centre with “all those old people.”

    Unfortunately, I am her only child and live 160 miles away so this makes it difficult to give the help I would like. We invited her to come and stay with us to give her husband a break, but she was reluctant to go far from home. Then finally, last November she agreed to stay with us. We arrived home after dark and the alarm bells started ringing when she asked what time her husband was arriving. She was incredulous that she had to stay. We phoned her husband so he could talk to her, but this ended in an argument between them. We managed to get her to eat something and showed her family photos and she seemed to be settling. Suddenly everything changed. She said that she was not staying and became very agitated, shouting, banging the table and crashing a chair up and down on the floor. She said that she wanted to spend the night in her own bed and said that she was going to walk home. She had absolutely no idea how far away we lived – we used to live a 5 minute walk from her and she thought we still did. We were very concerned that she would hurt herself, or even if she did settle, which was extremely unlikely, try to walk out in the middle of the night. We had no idea that she would become so disorientated away from familiar surroundings.

    She became hysterical when we said we would take her home in the morning so we agreed to drive her home at 7.00 pm that night. The car journey was awful. She cursed me and threatened violence. She had never spoken to me like this before and I wonder if she even knew it was me. It was like a person possessed. When we arrived at her home she had completely changed and was back to her old sweet self. We stayed the night in a hotel, but when I visited before we drove home she said that she would never forgive me for what happened and said she never wanted to see me again. Her husband was also very rude. I tried to explain that the only way she would have stayed with us was if someone had sedated her and he said that is what should have happened and she needs “taking in.” I was told to go away and not come back (not the exact words). He has been rude to other family members besides me.

    Since then her husband has had to give her the Risperidone and has increased the dose, however, I have noticed a change in her. Even back in the autumn she loved walking and would easily walk a couple of miles, but has now become frailer and slower. I am sure her memory has deteriorated more rapidly since she has been on the Risperidone. She does have a Carer who comes once a week to take her out. Unfortunately my step-father doesn’t seem to take her out much and tends to lock the door, understandable as last time she went out on her own she did it at night and got lost. I feel that Risperidone was prescribed to help him cope as much as to help her and a lot of her outbursts may have been avoided if he didn’t shout at her. Now, at times she doesn’t recognise him and says she is not in her own home. She knew me when I was there last week, talked about the old times and said she missed me. The next day she said to her husband, “Who was that woman who came here? I don’t think she ought to come anymore.”

    The house needs a thorough clean; her bedroom is squalid with heaps of rubbish in the corners. Although she gets Attendance Allowance the money is not spent on a much needed cleaner. I have done some housework and the garden when I’ve visited; I feel very much that I am interfering when I do things. I have been told not to bother by her husband, though he has also said I do nothing to help. A no win situation.

    She used to be a very smart woman and spend a lot of time on her appearance. I have just visited and done her hair – the only time that it is washed, cut and curled, is when I visit. This time I washed the clothes she was wearing as they were very dirty - I think she wears the same things for weeks. The lack of dignity is very upsetting.

    I think that if I still lived close I could have visited several times a week, taken her for walks and help her with the everyday things. Obviously taking her away from home to stay with us is not an option now. Sometimes I feel guilty and wish we had never moved so far away.

    I dread the thought of seeing her deteriorate and do not know how this will progress and how long she will survive like this.
  2. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    Hello Emily M, just posting to offer you support and strength in the difficult situation with Mum. I think members on here will be able to identify with many of the elements of your story. Hopefully the challenging behaviour has improved since medication, as far as I know someone doctor/community mental health team should be monitoring this - I wonder when the next visit is planned? in our case the mental health team turned out to be our best friends, after many cries for help of course. Please keep remembering that none of this is your Mum's fault and that you are doing everything you can. Attending to her personal care is a loving thing to do. I hear what you say in that her husband seems to acting as a 'blockage' here. Maybe speak to a member of the Alz. society regarding other issues. Chin up and best wishes.
  3. Emily M

    Emily M Registered User

    Jan 20, 2015
    Thanks for your kind words

    Thank you for your support Chrisdee

    Mum is certainly calmer on the medication, but with the side effects of having less energy and possibly increased deterioration of her memory. Taking it may be the lesser evil as she is certainly not happy when she is agitated and angry. The Mental Health Team have been helpful, but they are very busy and you have to persevere. I will have a word with the Alzheimer's Society about the other issues and see if they can come up with any suggestions.

    Thanks again.
  4. saucepan

    saucepan Registered User

    Jul 30, 2014
    I am so sorry to hear your sad tale. It is so hard watching our loved ones deteriorate.

    My Dad last summer had a few incidents, starting with a fall and pneuomonia, which after a week in hospital left him very confused and aggitated. It was an opportunity for us to get some help in for him as he lived on his own. He was very reluctant to accept any help and would insist he was fine and didn't have any problems. A couple of weeks later he started with wandering off in the night and having night terrors, this was very frightenting to witness and we then got social services invoved. He was prescribed Respiridone which definitely helped to calm him down and he seemed to be a lot less aggitated. Unfortunately it seemed to me that after a few weeks he was noticibly slower, shuffling, unsteady on his feet and seemed a bit zombie like. Amongst the things i read about the drug, it seems they will try and limit the drug use to 6-12 weeks. During this time we moved Dad into a care home as he couldn't cope on his own. This was against his will and we had to trick him to get him there but fortunately he has settled in really well and is being really well cared for and mainly I think he just feels safe there. The mental health team have been reducing his respirdone every couple of weeks and although there are times when he gets very aggitated (washing and changing his incontinence pants mainly) he does seem to be a bit more alert when I go and visit. Usually when I arrive he is dozing in his chair and he doesn't like joining in with activities and I think he is very depressed but I guess everything ties in with the awful disease that it is.

    I really hope you can make some clear progress with your Mom. I also hope that you can find some way of working with her husband in order that she gets the best care. I hope he is getting some support in some way. It would be great if you could get together (perhaps with a mediator?) to come up with a short, medium and long term plan and maybe you can feel a little better from at least taking some action.

    Who knows what the future will bring, it is totally unpredictable and I really hate the not knowing what will happen next and how long will this go on for, we can be greatful for technology and this support that is available to us here.

    Best wishes to you and I hope things calm down a little for you.
  5. Emily M

    Emily M Registered User

    Jan 20, 2015
    That's interesting information about Risperidone

    Thank you your kind reply.

    Interesting about the Risperidone. I will ask whether they intend to keep her on it for ever. As she has responded to it there may well be a case for reducing the dose at least.

    Usually when her husband gets angry I let it "blow over" for a few days. It may well be worth having a "quiet word" with the Carer that comes in or with Social Services about the personal care aspect. A hairdresser once a fortnight would be a good idea. As legally her husband, not me, is her next of kin I am not told about decisions unless I make a point of asking. As you say, many people whether they care for someone or are the recipients do not want to accept help.

    It is good to know that your father is being cared for in the Home and is happy about staying there.

    Best wishes
  6. rbrown

    rbrown Registered User

    Jan 22, 2015

    Loving someone through alzheimer's or other dementia's is hard enough without putting that guilt on yourself. No matter what you did, if you were there 24 hours a day or you moved continents, her decline was not going to be preventable, it is not your fault, we all make mistakes but it doesn't mean you don't love your Mum any less. It's hard to be there through it and its hard to be away from it, you cannot win honestly. I can't really recommend what you do as it is up to you regarding your mother's care but all I'm going to say is there is no shame in accepting help from various services it's not abandonment at all as I once thought myself.
  7. Emily M

    Emily M Registered User

    Jan 20, 2015

    Thank you for your reply rbrown. I moved 20 years ago. Hindsight - we can't predict the future. I would probably feel I wasn't doing the right thing even if I was there all the time. I am her only child, but a lot of decisions are out of my control anyway as her husband is the next of kin. I also have to juggle her needs with the rest of the family. Your support is much appreciated.
  8. Tears Falling

    Tears Falling Registered User

    Jul 8, 2013
    The distance is so difficult to deal with, leaves you feeling ........ Well you know.:(

    The fornightly hairdresser appointment is a good idea, bit of pampering for mum and a break for your step father.

    To support your mum you will possibly need to have a heart to heart with your step father, to ensure he understands your concerns for them both and that you want to help. He may not be fully accepting of the situation and so be worrying about the future and not sure how to express it.
  9. Emily M

    Emily M Registered User

    Jan 20, 2015

    Thank you for your reply Tears. He is probably very depressed about it and he has his own health issues as many people have as they get older. It is however, like banging your head against the wall and treading on glass. As I said he is not a natural carer and admits that himself. I just do not think he is able to change and the way forward is with as much help as possible from, for example, SS, OPMHT.

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