Alzheimer's stinks

Discussion in 'The Watercooler' started by Abbey, Dec 27, 2009.

  1. Abbey

    Abbey Spork Queen

    I need to vent a bit.

    My father in law is declining rapidly into this disease. H and I see it as we live just 2 doors down from them and check on father in law multiple times a day. The holidays really brought this to a critical level for father in law and mother in law.

    Christmas day we all went to extended family...played cards, etc. He couldn't remember how to play the games, shuffle cards, spread butter on bread...the list could go on and on. It's painful to watch as he tries his best to cover it up. When it was his turn to shuffle cards, he'd slip them under the table to me to shuffle. In the meantime, well meaning family would take H or I aside and express their concern.

    The inlaws have always made a HUGE deal of Christmas. Heck, in just their little half bath we counted 51 decorations. Well, it didn't go off as planned this year. The immediate family celebrated the holiday yesterday. Why, oh, why do people put themselves through such stress when it is supposed to be a day of thanks?

    mother in law breaks down literally in my arms as she has become the secret hider of father in law's needs. His response is always...I don't know, Connie will do it. He couldn't remember how to turn on the TV then becomes angry.

    The kicker for me was watching him open gifts. He cried the entire time. I think he knows this might be his last family Christmas.

    So, I summon H's brother and sister over to the house. They are in SUCH denial, but I think they saw enough to realize an 'intervention' is necessary.

    (Crud...I just got a call to go into work. Argh.)

    I'm almost more worried about mother in law. She's in breakdown mode. I'm checking into a federal program where a family member is paid to be a caretaker of an Alzheimer's patient. We have a family meeting next Sunday to discuss things like HE SHOULD NOT BE DRIVING, needs to get off the city council RIGHT NOW, etc. Most important is the fallout when we break the news to him. He won't handle it well.

    Ok, enough rambling. You were saved by Target. :) Got to run!

  2. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I've been very blessed that none of my immediate or extended family have been struck by this awful disease. I have watched a couple friends suffer as their parents declined.

    I think it is important that the family meeting be totally direct, even if it's painful. Plan for 6-12 months from now and not tomorrow.

    It will be tough - hugs.

  3. klmno

    klmno Active Member

    This is a horrible disease and very difficult on the family- as you are finding out. I had a member in my family have it and have had a couple of friends whose older parents died from it. I have heard that during the periods where the person thinks they are "back in time" (like thinking their kids were babies and the grown kids standing in front of them are siblings, for instance), that it's better not to correct them. In facilities that house patients they typically have photographs and memoirs of things from the past- somehow this is supposed to be soothing for them and actually help instead of make it worse.

    As far as caring for them- it would be good for the family to form a plan pretty quickly. Hopefully, someone already has power of attny. Remember to discuss things like father in law wandering off (it most likely will get to that point), when he needs help bathing, if he's doing risky things in the house (lighting candles in the middle of the night then leaving the room), etc. I recommend this because you said some are in denial about it and it appears that the family needs to come to an agreement that when it gets to the point "where father in law is doing ABC, or needs help with XYZ that mother in law can't provide", he will need to be moved to a special care facility. The facility can wipe out finances if they aren't already signed over to someone- it would be good for one of the adult kids and mother in law to go discuss this with an attny now before things get any worse. It's my understanding that only a very small percentage can make it all their lives living in their own home and it can drive those living with them to do drastic things just because of how hard and painful it is to watch and deal with.

    When you mentioned how hard it will be when "you break the news to him"- do you mean getting off city council or that he has this disease? Either way, I'd consider getting a dr involved in telling him this stuff. For one thing, as they sink deeper into this disease they sometimes have moments where they are a bit paranoid towards other family members and it seems like if he's only getting info about this from the family it could make that worse. Is he seeing a dr for medications that slow the progression?
  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sending hugs your way. I have a friend whose mom had it and to watch her deal with it gave me a bit of an idea of how difficult it can be.
  5. katya02

    katya02 Solace

    I'm so sorry, Abbey. Has your father in law had a mutidisciplinary evaluation? It's not clear from your post whether he has had a formal medical workup and diagnosis. If so, is there a team in place and keeping track of the progress of the disease? Normally a plan would be worked out with the care team. If an evaluation and formal diagnosis haven't been done, it would be important to arrange that asap. There are conditions that must be ruled out before a diagnosis of Alzheimer's is made. Once there's a diagnosis a family meeting can be held with family and medical caregivers present and the difficult topics can be brought up and discussed in a more neutral environment than an intervention-type meeting at home. It would still be difficult but the family would feel more support. A plan could also be worked on depending on your father in law's current and projected needs. It sounds like your mother in law really needs support asap.

    Sending warm thoughts and hugs. I hope you're able to get the support you need for your father in law.
  6. Star*

    Star* call 911


    I think despite what's going on with father in law - the fact that YOu are being left to deal with EVERYONE ELSES denial makes it even worse. I'm really sorry for you dear.

    Hugs & love
  7. KTMom91

    KTMom91 Well-Known Member

    Sending lots of hugs and extra strength for when you have the meeting. Keeping good thoughts for you.
  8. susiestar

    susiestar Roll With It

    Sending hugs and prayers.

    PLEASE keep an eye on them BOTH. When our adopted Gpa developed this he became very angry and we discovered he was hurting his wife when he got mad. She hid it for a long time - we found it by walking in on it. It was very traumatic esp as he was such a gentleman when he had all his faculties, and he was very outspoken against spousal abuse, so seeing him do this was awful.

    We had to threaten legal action to get HER to take precautions. We said we would tell their siblings, who would insist he either be in a nursing home or jail for abusing her. She wanted to keep him at home but it was just not safe. Like having a 2yo who was bigger than you are was how it could best be described.

    Make SURE you are not seeing signs of abuse.

    It is a huge burden on the caregiver, and the rest of the family must intervene.

    I am sorry your family has to handle this.
  9. Marguerite

    Marguerite Active Member

    I've seen a friend go through this (first with her mother, then her husband). Then another friend's father went through it, plus at the same time her mother was in such denial plus was controlled by her husband (yes, the one with dementia) that nobody could get in to help them. Things had to literally fall apart before an intervention was possible.

    What helped most -
    1) having access to resources such as local hospital Aged Care Assessment Team (ACAT) which for us is a government-based health service.

    2) The local doctor, who helped monitor the progress not only of the Alzheimer's patient but also the other family carers.

    3) Other support networks who can help put family in touch with services and techniques.

    My friend whose husband had Alzheimer's - she held his hand wherever they went in public. That way she always knew where he was. She also didn't want hi away from her but finally got to the stage where she needed respite. She was able to hire someone to come into her home and sit with him for a few hours while she could go and do the shopping, get her hair done, see her doctor - it helped to give her a couple of hours' break every fortnight. And every few months she put him into respite in the local nursing home so she could go away for a week or so. The first time she did this she felt like a traitor, he cried and didn't want her to leave him. She was also afraid he wouldn't remember her when she came back to get him. But he settled in well and still knew her.

    He finally deteriorated to the point where she couldn't cope and he needed more ongoing medical care. Not only was he now removing his clothes in public (they lived beside the main town beach, he would stand on his back lawn on a sunny day and decide it was too warm to wear clothes) but he was also increasingly relieving himself on the lawn, once in full view of guests. He had deteriorated to the level of a toddler; he wasn't being a pervert or anything, he just no longer knew any better.
    One morning she couldn't get him out of bed and he wasn't well - when the doctor came he said to her, "It's time. He is now too much for you to care for, he needs more care than you can give him at home." So he went into a nursing home.

    She had long before, several years before, taken away the car keys. She kept the garage door locked and he soon forgot there was a car in there. When he wasn't around, she sold the car - got someone to take it away to their place and sold it from there. Out of sight, out of mind, works well. For a while he was sometimes looking for it and there was an incident where he tried to report the car missing to police, but she managed to get through that one.

    By the time he died he hadn't been responsive for a very long time But although he hadn't been talking and seemed unresponsive, she said there were occasional moments when he looked at her and she was sure he knew her. He may not have remembered she was his wife, but he knew she was someone who loved him and in return he loved her for it. It was as if for him, it was the last thing to go.

    Very recently another friend of mine hs had her mother diagnosed with Alzheimer's. My friend and her sister have pooled resources to put their own care plan in place for their mother. My friend has been coming along to my choir (before Christmas) and while we were practising Christmas carols, the mother was quietly singing along. We had some probems when I was trying to teach my friend some harmonies - her mother was getting increasingly agitated, I think maybe because we weren't singing them right. My friend left to take her mother home then came back to practice. She only lived a couple of doors away.

    Abbey, are there any support networks for Alzheimer's in the area? They may be worth contacting, to ask them for suggestions that could help your parents-in-law.

  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Abbey...having gone through this, Katya is completely correct. Your father in law needs to be under a doctors care if he isnt already. He should have already had a MRI and a CT scan. He needs to have at least a rudimentary neuropsychologist exam. They will ask him to draw a clock, name clothing and what they are for, count backwards, etc.

    Someone does need to have at least medical power of attorney but full power of attorney is best.

    Please start reading up on alzheimers on the internet. There will be sundowning, there will be wandering off, there will be confusion. He very well think that people are his parents or coworkers. My mom thought Jamie was her brother because he was in a Marine uniform. She had no idea who I was. She did remember who Ronald Reagan was When 9/11 happened she thought it was WWII.
  11. Abbey

    Abbey Spork Queen

    He's had every test out there and is on medications. It's the small things he can't do. He could tell you the name of every person in this city since 1940 but he can't zip his pants up. Weird.