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  • Our Alzheimers patient mother rejects help. Please advise

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    Old 06-02-2006, 11:18 AM   #1
    ANyeF
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    Question Our Alzheimers patient mother rejects help. Please advise

    Hello there! This is my first posting and I am hoping for some advice on how you all handled the initial conversations and deliberate moves into a more protected environment for Alzheimers parents/spouses while still respecting their dignity and independence. Telling a parent they are no longer capable of being responsible for themselves is difficult and sad and you have all been there.

    My 85 year old mother has been diagnosed within the past six months with "dementia, probably Alzheimers". My sister and our families have recognized changes for several years and finally got her geriatric physician to do more involved testing. She does not remember the diagnosis and constantly states that she feels so fortunate to be "only dealing with arthritis and nothing life-threatening". When we try to confront her (gently and tactfully) about a need for changes in her life-style like giving up driving or having a seniors service bring daily meals, or having someone move in with her, she angrily denies any need for this and often goes to her bedroom and slams the door - end of discussion.

    She lives alone in the large house she has had since 1964 and even rents to a tenant in an upstairs apartment. Right now she seems to be holding her own with financial tasks, making deposits and paying bills but has always had an obsession with keeping those affairs in order. However, she exhibits all of the signs: Has practically no short term memory, has completely withdrawn from social and physical activities, attention to grooming is diminishing (totally out of character), does not take her medications, unless family members bring prepared food she mainly eats "Healthy Choice" frozen dinners, is beginning to confuse/forget family members in her grandchildrens' generation and down and in-laws.

    Up until now we have let this ride, thinking some kind of crises would be the catalist for our proactivity and she would just have to accept the changes we implement. At this point, however, we are very worried about her security at home and safety on the road for herself and others. The only driving she seems to be doing is to the grocery store just a couple of blocks away to buy her supply of Healthy Choice frozen dinners! My sister lives just an hour away from Mom, but I live 2,000 miles away. I am planning to visit in a few weeks and we are trying to plan a successful strategy.

    Is it kinder, more respectful to her to allow her to continue living as she is (with the exception of taking away her car). She has spent much of her life on her own, making her own decisions, and would probably say she'd rather live with the consequences of the risks than have the changes we want and give up her privacy/dignity.

    Thanks so much, in advance, for your input!

     
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    Old 06-02-2006, 01:48 PM   #2
    Martha H
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    Re: Our Alzheimers patient mother rejects help. Please advise

    Dear ANyeF,

    Your mother reminds me so much of mine, except Mom is older. She is 97 now and has only been in a nursing home for 6 months.

    She was also fiercely independent. She had a car and drove (in New York City!) until she was 91. Then she gave up the car because of deteriorating eyesight, not because her mind was going, although, in retrospect, it was. I went to live with her that year and stayed for 5 years. During that time it changed from me doing laundry (out) and shopping and helping in the house to my being the full time housekeeper, bill payer, caregiver and watchperson over Mom as she became more and more confused.

    I would say it is a good thing to allow her as much independence as possible , and as you and your sister gradually take over the reins, let her always think you are helping out because of her 'arthritis' - and never tell her she is mentally incompetent. (however, one of you ought to have Power of Attorney to make decisions later, as this can only be signed while Mom is still fairly lucid. Any excuse will do for this - 'everyone needs to choose a POA by age 85', or something similar. )

    As time goes by you will notice when it becomes dangerous. If she is getting lost, if she is burning food and pots, if she is leaving bills unpaid and leaving windows and doors unlocked, etc. That is when a change to assisted living will be needed, or even a move to a nursing home. My Mom is now in a NH.

    Having someone come in daily to check that she takes her pills is a possibility. I live in Indiana now and here I have several neighbors who get a daily visit from a nurse. The nurses help bathe them, make sure pills are taken, make sure they have a minimum of order and cleanliness in the house, etc. and stay less than 2 hours.

    In new York when we finally hired a Home Health Aide, the minimum was 6 hours a day and it was very expensive, but it did allow Mom to live at home for another 8 months, since I was still going to work every day. But there were a lot of problems with that too.

    It is too bad you live so far away. One of you may have to move - move Mom near you , or you go to be near Mom, at least temporarily (as she gets worse, later) until she is settled in a facility that caters to such patients.

    I hope it progresses very slowly and you get the help you need. Above all, keep her out of harms way, without making her feel you are bossing her around, and never use the nasty word 'Alzheimer's' , it scares them to death (with good reason ...)

    Love,

    Martha

    Last edited by Martha H; 06-02-2006 at 03:38 PM. Reason: sp

     
    Old 06-02-2006, 02:04 PM   #3
    Kathy Rolfes
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    Re: Our Alzheimers patient mother rejects help. Please advise

    Hello Martha,

    I'm Alice's sister Kathy and it was wonderful receiving your detailed helpful reply to our questions today. Your ideas are great and very helpful! I know it's been a very difficult time for you in the care of your mother. Hope things are settled now for all of you.

    I'm the daughter who lives an hour away from Mom and have been seeing her on a weekly basis up until now. We realize it needs to be more frequently and I'll be retiring from the school district in mid-June. (I may still work part time in the fall if all is going well). Right now I'm planning to stop by Mom's house a few times a week with plates of home-cooked meals, to take her to appointments and out for lunch. I'm feeling it might be best to start out this way before we introduce another "professional" care giver, although I know it would give us all a sense of security to know someone else can be there on the days I can't.

    I'm sure Alice will be responding to your post too. Once again, thank you.

     
    Old 06-02-2006, 03:27 PM   #4
    Martha H
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    Re: Our Alzheimers patient mother rejects help. Please advise

    I am sorry that both of you have to be here .. but please know that you will get a lot of moral support. These ladies (and a few gentlemen) kept me above water emotionally when I thought I would crack up. Ask any questions and you will get several replies, from those of us who have been there or are where you are right now. It is a good feeling that we are not alone.

    I'm off to New York tomorrow morning to visit Mom at the NH and my brother and sister in law. It will be good to see her again, but also depressing.

    I am hoping and praying that a cure for this disease may be found soon!

    Love

    martha

     
    Old 06-02-2006, 03:51 PM   #5
    BarbaraH
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    Re: Our Alzheimers patient mother rejects help. Please advise

    Hi Kathy and Alice!

    Welcome, though it's no fun having the need to be here.

    My 80+ year old mother had lived alone in a nice little house that she bought at age 79 and it had a nicely small and managable yard. My Dad had died 12 years before. I'm the only child and lived 1200 miles away. Not easy, as you know, Alice!

    I won't go into details of Mom's decline, but it was after a few minor and one major car accident (no one even hurt, thank God), scary contents in her refrigerator, and forgetting a gazillion things that I finally knew I was stuck being the bad guy. I could not let mom stay home alone. Among the few alternatives, I chose to pursue an assisted living set-up where Mom would have a 1 bedroom apartment and her own furniture, 3 meals a day, and a nursing staff on the premises who could provide different services to residents on an a la carte menu of charged. The facility was near where her sister lived, so they could still visit together.

    The catalyst in Mom's case was that she tried to leave the house at 11pm when I was visiting. She had her purse, cold cream, and shower cap and fought me for the car keys. She refused to believe it was 11pm and said the clock and black sky didn't mean anything. YIKES!!! How long had she known night from day?

    I just told Mom of my concerns for her safety, that I needed to know that she was warm, dry, clean, safe, and had good food to eat. She knew it had gotten difficult to do lots of things and now is was her turn to need a little help. She cried, I cried. Buckets. I chose 2 places and we went to see them. She chose the one where several of her friends lived. A week later, her apartment looked so pretty and sunny as we sat in it and cried some more. She would have loved it had she still been her social butterfly self. 6 months later she thought that pretty place was my home and was concerned her mother didn't know where she was.

    As far as driving is concerned, I hugged Mom and asked if she remembered that kids had to be 16 years old before it was their turn to drive a car? She said she did. Well, since she was 84 and had had 3 accidents, it was sad, but her turn to drive was over. She cried, she got angry, I was firm and I'd already taken all of the car keys. I also told all of my cousins that she was not to drive and I told her car mechanic the same thing! It took a while until she was over that, but all of the keys were in TX and the car was locked in her garage and those keys were in TX, too.

    Based on my experience, I'd be concerned about your mother having a tenent because she will be less able to care for herself and cannot safely house someone else.

    The most essential step is the Durable Power of Attorney so one of you can act in her behalf, pay her bills from her account, and talk to her doctors. Martha's suggestion about using her age as a ruse is good! I was lucky in that Mom's church had a program about the legal paperwork you needed to do to help your children as you age. Mom had done the DPOA many years before I needed to use it. An eldercare lawyer can be of good help to make sure all is in order before your mother gets worse.

    If you haven't already read it, at the top of this thread is a sticky, The 7 Staged of Alzheimers. It gives a good overview of the common behaviors you can expect, although each patient spends a different amount of time at each stage and they can bobble back and forth between stages a bit, too.

    There's also a sticky about who we are, so you get an idea about who is answering you!

    Dealing with a loved one with Alzheimer's is not easy. You lie a little, manipulate conversations and situations, and do whatever you must so the ditsy loved one is safe and the people of the world are safe from them!

    Come back as you need to, we're here - and someone may have thought of more to tell you...

    Wishing you both well! Barbara

    Last edited by BarbaraH; 06-02-2006 at 03:58 PM.

     
    Old 06-02-2006, 07:24 PM   #6
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    Re: Our Alzheimers patient mother rejects help. Please advise

    Hello girls, welcome to our little haven in this mixed up world of Dementia/Alzheimers!

    Martha & Barbara are both right ... and I'll put my 2 cents in as well ... as long as Mum is SAFE, encourage her independence, but first and foremost, don't let a crisis make your decisions for you .. eg: the car. It is far more safer to be cruel to be kind, because the next crisis could be a tragic one as far as the car goes. If you can 'break' the car, 'lose' the car (depending on her lucidity and insurance companies) or somehow disable the car and warn neighbours, mechanics etc that they are, under no circumstances, allowed to 'fix' the car, that could be a start. Whilst the car is out of commission, many worries are automatically taken care of.

    And on that note, warn the tenant upstairs, even offer them some form of payment to keep an eye on Mum when your not around (depends on the tenant of course) until you can get more closer supervision organised. If Mum is already used to having somebody upstairs, then perhaps a full time carer can be installed upstairs instead of a normal tenant?

    Next, whilst Mum is still in the here and now, get that Power of Attorney done with and fast. Any excuse will do, as long as Mum signs the relevant documents ... you will learn, as did we all, that our little lies pave the way for safety .. you have to be continuously one step ahead of them, anticipating their next move and counteracting the fall out (LOL).

    I cared for my relatively young Mother In Law (she's only just turned 75) and my Father In Law (passed away just before Xmas aged 71) and she had a particularly nasty dementia (we believe one of the forms of vascular dementia) because that kind appear to turn a person quite mean and violent, and taking away her right to drive fell on me and it wasn't pretty. I felt awful, and I was a big meanie, but it had to be done! She had wiped the door off a parked car whilst she was driving, and then, when approached (tracked down) by the Police, told them she never had an accident, and how DARE they ........ well, yeah .. it got messy .. and her licence got suspended, but she didn't understand the letter that said she couldn't drive, and well, you get the gist of things .. it got ugly is probably a nicer way of saying it.

    But ......... as much as it was horrible, it had to be done, because the last thing I wanted was some Mother on our doorstep telling us my MIL had run her child over .. y'know???

    My MIL also had a nasty side-effect of dementia called Aphasia (without speech) and her spoken words turned into gibberish, she believed she was saying normal words but "Good Morning, how are you?" would turn into "to, to, that they threy very very blather one" ................... *insert gobsmacked eyes here* .................... and when you replied back, it came back to her as gibberish, so she would look at you as if you had gone totally insane and get cranky ... once I replied back to her with the exact gibberish she had just said to me, and she was happy!!! Go figure!!

    Anyway, each of our charges is a unique individual and the dementia will affect them in various ways, but ultimately, they have the common threads running through them.

    I know distance makes it hard, but you must act sooner rather than later .. get yourself and Elder Lawyer, one who specialises in Elder Care and they can help you in the finances area.

    Big hugs .. big BIG hugs to you both ...........

    Sally

     
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