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    Old 11-03-2007, 08:19 AM   #1
    Suzaroo
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    Hoarding and family denial

    My Dad has been doing this crazy hoarding behavior for a couple of years now, and it is getting worse. He collects used coffee cups, steals bits of toilet paper/kleenex from the bathrooms at his assisted living place (he has drawers STUFFED with them), snitches cookies from the goodie tray even though he has got hundreds of them stashed around his apartment, the list goes on...

    He is terrified of running out of things, especially his adult diapers. We've purchased a year's supply of the things and there are stacks and stacks of them but he refuses to change them because he says he is "running low". When I am there I try to be understanding because I know it's not his fault. I even humor him and smuggle Depends out with me when I leave and bring them back when I return and tell him I brought him some more.

    The problem is, that my brothers are having a hard time acknowledging that Dad is sick. They seem to think that Dad is choosing to behave this way in an effort to manipulate us into letting him move back home, and that his urinary incontinence is by choice- that he is "not trying".

    I guess my questions are:

    -How common is this hoarding behavior and ways to handle it/reassure the patient; and
    -Are there any really simple books or programs that I can share with my brothers that will help them to see that being angry at Dad is a totally inappropriate response?

    Thanks in advance, and hugs to all!

    Suz

     
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    Old 11-03-2007, 08:04 PM   #2
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    Re: Hoarding and family denial

    Anyone? I am feeling so alone with this. Sometimes, I too just read and don't post- because I don't think I have anything meaningful to add, or I am too wrapped up in researching my own situation... but tonight I really need someone to reach out. So if you read this and think you don't have anything to post- please just say that I am not alone out here tonight.

    Today would have been my Mom's 63rd birthday. Since she tragically died in 2001, my Dad has never been the same.

    When I was growing up I was essentially an only child, and my Dad and I would fight like cats and dogs. I left home at 17 and married (a creep, who I am now divorced from).

    After my mom was killed, my Dad and I became so close, we clung to each other for dear life. She was here one day and gone the next with no warning. He was my strength and now, I must be his. I will be 30 on 12/5, and Daddy just turned 75 on the 8th, and people often ask if I am his granddaughter. No, I am the adopted product of the second trophy wife who abandoned us and killed herself with alcohol.

    Happy Birthday Mommy. We miss you terribly, you're all Daddy remembers of his life. I know you did what you had to do and I will wait until I get to heaven to hash it out with you. :P You weren't supposed to leave us this way- we had a pact!

    I miss you. Your baby girl,

    Susan

     
    Old 11-04-2007, 12:58 AM   #3
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    Re: Hoarding and family denial

    Hi, suzaroo! I signed on here just to answer you. I was so sorry to read both your dad and you are going through this long and tough life change. Sorry I don't have any specific advice.

    My only idea is, is your dad on an anti-depressant? If so, is it one of those that are found to specifically help obsessive-compulsives? If not, it might be worth considering. I understand nowadays in general (though I'm not sure about with Alz.), hoarding is considered a type of obsessive-compulsive disorder and needs to be taken seriously and treated as a mental illness, such as with medication and therapy where the hoarder develops the ability to make different decisions with "stuff." They learn the real reasons why they hoard and what the objects mean to them that is not rational. I read where one hoarder said when he saw certain items abandoned in the street, he felt like they had to be rescued. (I thought that was quite poignant, don't you?) Many hoarders have child abuse in their background, apparently.

    Of course where Alzheimer or other dementias are involved and THEN hoarding starts after that -- then I'm not sure the above applies. But maybe it would still make since --?? As we age, even without dementia we lose so much. Our youthful appearance and physical strengths, our hearing, vision, reflexes. Our loved ones and friends die, we have divorces or other losses and disappointments. If your dad is retired, he surely lost a lot then -- a place where he belonged every day and his skills were needed and respected, built-in socializing and the security of a routine, etc. He has also lost much of his independence, such as having to give up driving which I'm sure is a very unwelcome blow esp. to a man.

    And I feel we even lose the basic respect or regard of much of society as we age. My elderly father was upset recently when a doctor said something about a health problem my dad had, which the doctor said offhandedly looked pretty good "for someone his age." My dad felt "written off" -- he wanted the best care for his condition just like anyone younger, the best possible treatment, period.

    Anyway, now your dad is losing control of his bodily functions. And no doubt he thinks about the future where maybe soon he will lose his very life in a difficult manner, becoming unable to talk, communicate or digest food.

    My point is -- sorry to be so long-winded :-) -- with all these LOSSES, maybe your dad's hoarding is a way of hanging on to what little he can, the paper cups and diapers and what not, at least he can try to make sure SOMETHING won't be taken.

    As far as the diaper hoarding -- I just thought, could you label the diapers by writing on each package (in big letters for him) Monday 11-3, Tuesday 11-4, etc. Then lay out the whole next week's supply somewhere he can see them and promise him you will bring more each week way "so there will never be any chance you can run out."

    If he is not able to be rational enough for such reassurance to help, maybe a mild anti-anxiety medication like Ativan or one of those would put his mind more at ease.

    Just so sorry your Dad and you are going through this. There are many kind and smart people on this forum who I'm sure will come in soon with practical and encouraging advice "from the Alzheimer trenches." Hang in there -- you most definitely are not alone as we all age and try to cope with these problems.

     
    Old 11-04-2007, 02:48 AM   #4
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    Re: Hoarding and family denial

    Suzaroo, you are not alone. There are many of us here who have a loved one with Dementia. It is a long hard road, but you only have to take it one day at a time. Don't let it get you depressed.

    Hoarding is typical. Mom kept asking me to buy her some underwear (I lived with her for 5 years) and I assumed she had thrown out the ones that got stained (she developed problems with continence) so i kept going out and gettng another 3 pack of inexpensive cotton undies. When I cleared out her thngs after she left her apartment, I found about 60 pairs!!! Many unopened.

    She also hid small chage, handbags and purses, odds and ends in weird places. She never could find anythng. Some things never showed up (large amounts of cash whcih 'disappeared" ...) Her Christmas tree ornaments brought with her from the old country - gone. Given away? We never found out. Her memory is totally gone.

    It is a hard disease to deal with, and you have already been through rough times. But you can do it. You will get the help you need.

    Love,
    Martha

    Last edited by Martha H; 11-04-2007 at 02:51 AM. Reason: sp

     
    Old 11-04-2007, 08:12 AM   #5
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    Re: Hoarding and family denial

    My Grandmother hoarded underwear. She would complain her bras were too tight (she was buxom and stout) but would not wear any of the new ones Mother bought for her. The uncomfortable, too small ones "weren't worn out", they were still "good". Same thing with blouses, and tin foil (washed and reused). It is part of the dementia deal I guess.

     
    Old 11-04-2007, 08:39 AM   #6
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    Re: Hoarding and family denial

    I haven't experienced too much hoarding behavior (Nana collects napkins but that's about it) but I'm posting to address the denial problem with your brothers. This is I think the most difficult part of dealing with this disease, especially if one's relationship with the person who has AD was not always ideal. For awhile there I thought my grandmother was just being a "beeyotch" (which was not uncommon for her even in her younger days) and it took witnessing a full-blown delusional episode to realize this is a disease and she really can't control it. In fact, she'd rather I think she's horrible and evil than that she's sick, but now that I know what it is I can't be angry at her any more than if she had cancer.

    Men often have problems with accepting serious medical conditions (I've seen it in some male friends with autistic children as well) and I think your brothers will come around eventually. It will just take them a little longer to quit denying there's a problem. Heck, my Nana lives here and I only finally accepted she has AD within the last two weeks.

     
    Old 11-04-2007, 09:11 AM   #7
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    Re: Hoarding and family denial

    Suzaroo~I can really relate to the hoarding! My husband and I cleaned out my Mom's cupboards, and closets, and had to haul the out dated food away in two truck loads! She had 40 cans of Eagle Brand milk, and at least 60 of soup! When we were finished, the useable stuff would go in 6 grocery bags. Pitiful! She would never let us clean them out before she went into the nursing home~we would get the *whatever do you mean* when offering our assistance. We also found things in odd places, bits of nothing really, but she had taken care to place them for safekeeping.

    So sorry you are going thru this with your Dad. DeeDee

     
    Old 11-04-2007, 12:26 PM   #8
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    Re: Hoarding and family denial

    Don't forget either everybody, that the generation who have been so affected by Dementia were also part of the "depression" which is where they learnt that not everything will be available, and re-use not waste everything you possibly can.

    Good heavens, I remember my mother getting cross if we tore the Xmas wrapping, because it would be ironed and put away until next year .. she's 80 now (non dementia but I think she's got old-age dementia mildly).

    Even now she'll ring me and say "IGA have soup on special, you should get some for Winter." (it's just turning summer here) .. "Thanks Mum, but no, it'll be out of date by then, but it's a good idea for you!" (she'll eat soup whenever and since she's on her own now, it's nutritionally sound for her).

    Dementia enhanced the 'logical' hence the hoarding. Its not dangerous if kept on top of and it is also a recognised disease in itself. If the hoarding is causing falls or trauma then by all means, step in and fix the situation.

    I like the idea of squirelling away a packet of diapers at a time then returning them. Perhaps the entire supply can be removed (because he can SEE what's left and it will NEVER be enough) and just a packet brought in when needed (saves the options, saves the choices, saves the having to make decisions)

    Like I've said before, having choices when you have dementia makes everything WORSE. Take away the choices, you take away the panic they feel.

    Hope this helps a wee bit.

     
    Old 11-05-2007, 02:02 PM   #9
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    Re: Hoarding and family denial

    Oh, oh...here I sit at my crowded desk...at the end of a busy day and getting ready to teach my Adult Ed. classes. If I posted a pic, I'd probably shame myself into cleaning off the cluttered file cabinets and tables.......but , it's all good STUFF!!

    When we begrudgingly took the year it needed to clean out my Mother's big house several years ago...my 5 siblings and I all realized that most of US had developed the same "hoarding behavior"!! It is a learned behavior...but hoarding also does indeed go along with Alzheimer's traits. (It took me several hours just to get all the carefully cleaned styro meat trays and other "packing" stuff sorted out from beneath her huge old farm kitchen table!) When "napkins" are mentioned...I feel great understanding there also!

    Mom was a very good practicing artist...was well known in our area for her artwork...but when I brought her a big box of new colors after several weeks at the nursing home...she left them alone. A conversation with my sister revealed that she simply could not choose which ones to use...Angelbear is sure right that decisions are so hard to make for an Alzheimer's person.

    Both of my in-laws also suffer from this horrendous disease...the 3 sons have made no effort to sort out the scattered belongings in the almost 2 years since they were placed in different places. ARGH!

    I sure can relate to the sibling indifferance to what is obviously happening also...this disease has absolutely fractured our family beyond repair. I disagree with friends and family in my own life that simply dismiss the lack of responsibility shown by saying..."It's just so hard for men"...do they really think it's easy for those of us who DO visit?!? Of Mom's 6 children, I'm the only one who visits (9 years now)...and 3 brothers live just a few miles from the Alzheimer's Facility.

    Sure didn't mean to go on..............but it DID feel good!.....Pam

     
    Old 11-05-2007, 03:20 PM   #10
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    Re: Hoarding and family denial

    In our family there are two daughters and one son. My brother has disproved the theory that men do not understand or do not want to take repsonsibilty over and over again. In our case it was the oldest sister who denied, refused to believe, helped very little, and hardly ever visits Mom.

    I think each case is different, but I am so thankful for my brother, and his caring nature. He and his wife also cared for HER Mom for 13 years of Alzheimers. That was why I stayed with Mom for 5 years - my SIL could not bear another dementia patient, so soon after her own Mom passed away. When my Mom did go to live with them (at their request, because they saw me falling apart physically and mentally) it thankfully only lasted 3 months, because she fell and broke a hip and had to go to a NH to stay.

    Now 99, she has been there over 2 years. IF she had stayed at their house, I am sure my brother would still be the caring, gentle, understanding and non defensive person he has always been.

    He says his attitude towards life was shaped in the days of the Vietnam War. His friends were dying, his life was in constant danger. He says he learned to live from day to day and enjoy the happiness each day can bring.

    God bless all caregivers!

    Love,

    Martha

     
    Old 11-05-2007, 04:29 PM   #11
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    Re: Hoarding and family denial

    I agree with you Martha, it is the individual's nature that determines how they react. Those that are more nurturing, selfless, and easy going seem to be the ones that take on the burden of care giving. It also takes a realistic outlook and determination.

    I am not sure if the fracture that has developed in my family will come back together. My sisters and I have four very distinct personalities and four points of view. We are all strong willed and don't always agree. With both parents having dementia, hard decisions have been and will be made. I guess time will tell how it all turns out in the end. I have not given up.

    Martha, how is your Mom doing this week?

    Love, Deb

     
    Old 11-06-2007, 02:53 AM   #12
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    Re: Hoarding and family denial

    My brother says she is old, tired and worn out. Little interest in anything. Fading away.

    We also have a breach in the family - my sister just hasn't held up her end at all, and she is also incomprehensibly angry at me for maintaining that Mom had Alzheimer's Disease as long ago as 2003. She did of course, but E kept arguing that there was nothing wrong with Mom, anything she did was my fault. We have not seen each other since. I was the live in caregiver but she 'knew' more about how I should be doing it from afar - Mom went there for a short visit each year. (the last time we had her sent as an "unaccompanied handicapped person" ... the airline takes special care and gives her to her family on the other end instead of just letting her wander off.)

    As much as I appreciated those breaks, it was far too little - and then after Mom was back in NY, E called to tell me how bright, intelligent, 'scintillating company' etc Mom had been on the short visit. Translation - "you are crazy, Mom is fine. She does not have Dementia."

    We are only 13 months apart in age and I thought we were the best of friends, but now she is worse than a stranger.

    Another casualty of this disease.

    Love,

    Martha

    Last edited by Martha H; 11-06-2007 at 09:29 AM. Reason: spelling

     
    Old 11-06-2007, 09:08 AM   #13
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    Re: Hoarding and family denial

    Thank you for the update on your Mom. I think of both of you often and keep you both in my thoughts and prayers. You were so kind to me when I first wandered onto this board with my stress level off the charts. It was your words (along with others) that helped me through one of the most difficult times in my life. I will forever be indebted. I am glad you were able to see your Mom and she was able to celebrate her birthday. I wish for her a gentle fade that can be a blessing for you all.

    That is such a sad result of this disease Martha and much of what has happened with my baby sister and myself. Having worked in long term care I knew the symptoms and picked up on them early. I was the one that got the diagnosis. For a year I would try to describe what was going on and I would get back two things.... "I don't need your knowledge of ALZ!" and "We do not need to explain every little thing Mom does wrong!" What I heard was.... I don't want to know what is wrong. My sister was working at that time and I would be with mom for weeks vs her hours. At that time Mom was able to "hold it together for a while" and then she would become so exhausted that she would totally lose it and I would get the phone call to deal with it. Even with the sitter I would be on the phone with mom several times a day. My sister called me once and accused me of trying to take Mom's driving priviledges. She was furious with me. This was one of our biggest bones of contention. She was very much into what Mom wanted and not what was necessary.

    As it happened the Assisted Living Mom and Dad decided on is in the town my baby sister lives and now she has more of the responsibility. I have to let her do it her way now though I disagree with some of what she is doing. My baby sister still holds great resentment of me. On the flip side she doesn't think I am doing what I should now. She is 15 minutes away and I am 3 hours. I am exhausted from the last year and my car is worn out too. My sister refuses to ask for help and then bashes me because I don't know what she needs. On the other hand when I have offered my help I have been told to forget it. I have been accused of all kinds of things and I can do nothing right in her eyes..... even when I follow her suggestions.

    One of my other sisters and myself have actually become closer because of all this. It is odd how different people react to major stressful situations.

    Yet I am still trying. It is not totally broken but the fracture is deep enough that it will leave a scar that will probably never go away.

    This is such a horrible part of this diease......

    Love, Deb

     
    Old 11-06-2007, 12:50 PM   #14
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    Re: Hoarding and family denial

    Yes, our family have been torn apart by this disease ... my BIL was the one in denial and decided to blame me for his parents deterioration. For 2 years I called for help and assistance, only to get the occassional visit and then the statement "nothing wrong".

    He only agreed ONCE with me that there was something wrong, and from that moment forth went into the biggest case of denial I've ever experienced.

    After I got my in-laws placed in nursing homes, he went off the deep end. Screaming at me how I had taken advantage of his good parents and used them and abused them to my own advantage (oh?) How he was going to "make me pay"..... seriously, this guy was terrifying, he had me cornered and was screaming so loudly he was spitting everywhere. He blamed me for my daughters not liking his girlfriend (she who said she would always help but when booked wouldn't even bother to turn up) he blamed me for everything.

    Me. Looking after HIS parents. The story goes on and on and on, and there simply isn't enough room to write the entire saga, but needless to say,it was because his beloved mother (who I did adore) got this insidious disease that this family was torn apart. I understand he wanted his mother back the way she was, and I was too willing too agree with the diagnosis too quickly. so then it was my fault.

    so ......... we fled 1000km away to a life of freedom, but isolation because there were no family and friends to support us. the first year was very lonely, the 2nd year has been better now, I've made a few friends. And BIL is living 300km north of me again .... so NOBODY is there to check on MIL in her nursing home unless he decided to visit. The house he screamed at me that we had taken advantage of lies empty (after his daughter lived in it for 18 months and ruined the place apparently so then he kicked HER out),

    and who has achieved what out of this? Madness. Complete madness. A family torn apart, nobody speaking to anybody, and you know what? It's STILL my fault (I hear).

    Gosh I'm clever.

    Bah ....... I hate what this disease has done to me, my family, my extended friends on Healthboards and everybody who has come into contact with it.

     
    Old 11-06-2007, 01:48 PM   #15
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    Re: Hoarding and family denial

    Quote:
    Originally Posted by angel_bear View Post
    I understand he wanted his mother back the way she was, and I was too willing too agree with the diagnosis too quickly. so then it was my fault.
    I think you hit the nail on the head there Angel!!!!!

     
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