Please...help me to understand Alzheimer's

Auntie L.

Mouseketeer
Joined
Apr 27, 2008
Just thought I'd check in with all you caregivers - hoping all is Ok. It's tough work, for sure. Disney granny, you sound like a very caring person and a great daughter. I appreciated reading your post.
 

Auntie L.

Mouseketeer
Joined
Apr 27, 2008
Well, not too much action lately so I thought I'd bump this up again. Hope all the Alzheimer's caretakers are doing OK. I was quite cranky today, but this will pass. Mom's ok, just very needy -she followed me around like a puppy today - yikes! Take care everyone.
 

Lorelei528

DIS Veteran
Joined
Mar 29, 2006
I'll add myself into this mix....my mom who is 88 has recently been diagnosed with dementia.
Her mom had it too.

I'm not in the mood to talk about it right now (and I get like that a lot), but it's helped to read this thread and to know there are other DISers out there going through a lot of the same things as me.

The big thing on the table now is that my mom is till driving (not a lot, but she has her car and keys). And although she can get pretty cranky at times, she's not aggressive or violent in any way.

I'll check in again, just wanted to post here now.

Thanks all-
Lori
 
  • Luv0fDisney

    DIS Veteran
    Joined
    Jun 29, 2012
    I am here with prayers and thoughts.
    My grandmother (dad's mom) had alztheimers and we had her in a home right when my grandpa passed in 2009. She was there til 2012 when she passed away. She would ask my dad the same thing over and over and when we told her that her mind wasn't working right, she said "no it's working good." Alztheimers patients don't know there is something wrong. My grandmother on my mom's side had leuie body dementia where she came up with these weird stories that she would see on tv news and incorporate in her life like it was happening in her house and nursing home. With Lewy Body dementia patient's they know that something is wrong, but with alztheimer's they don't think there is anything wrong.

    I know what you are going through and I'm sending prayers and thoughts.
    My grandmother (with LB dementia) also broke her hip 2x. :(.
     

    codysmom1990

    Mouseketeer
    Joined
    May 26, 2007
    I'm so glad I found this thread. As I am watching my brother-in-law in his final days of living with alztheimers and severe dementia. I have had other experiences with this dreaded disease, but it doesnt make it any easier. Still hurts the same. I understand it better, just cant believe how quick it progressed in him. He was driving in August, jumped over a neighbors fence to escape in October, and now this is it. Feel real sad, keep wondering if I could of done better for him. It seems like he really declined after being told he couldnt drive anymore. He did not take the news well at all. He fought us constantly and begged us for his keys once last time. He just wanted to take the last drive he said, I couldnt risk him getting into an accident, him hurting someone or himself, he just couldnt understand why he couldnt drive. I kinda wish I let him, but I know it was right not to, I took him on drives, but he wasnt happy with someone else driving him. Has anyone else experienced this, I havent with my other relatives. He just wants his clothes off. Sine October, he would go around always taking his clothes off, even now when he is pretty much out of it, he wants everything off, not even blankets or sheets. So far I have managed to keep his diaper on, but he keeps pulling at that to. He was always a private person and would never of done this otherwise. And he was always cold and would even wan the heat on in the summer. Its winter now, hes gotta be cold, but nope, he wants them off. He seems so content just laying there like that. Thanks for group. Lisa
     

    shadowryter

    DISNEYHOLIC
    Joined
    Feb 28, 2008
    Hello Lisa, I'm so sorry for what you are going through. I started this thread because I had no idea of what I was dealing with with. I now have a better understanding of this dreaded disease thanks to the responses that I have received here. Please know that you are not alone. My dad has been in a nursing home for a little over a year now. He spends most of his days singing and does not know me. He went from walking on his own, to a walker and now a wheelchair. My mom has been in a skilled nursing facility due to a second broken hip and Congestive Heart Failure. She's been away for 5 months (came home last Saturday) and my dad does not even ask for her. My dad could not dress himself. He did not remember how to turn on the TV. He took off in his truck and got lost in our neighborhood. I had to call the police who found him just down the road. He was angry and hated me and my mom for having to surrender his license. The last straw was when he tried to leave in his pajamas on a cold winters day and threatened to kill himself, earlier threatening the lives of my mom and I. The police found a ten inch screwdriver hidden underneath his pillow case and I shudder just to think about what he might have been planning. They took him away that evening and I haven't seen him much since my mom needs constant help and I am her caregiver. You do feel sad and frustrated and lost. It's not your fault. It's the nature of the illness and it sounds like you need some help. It's quite a task taking care of someone with Altz. Don't be afraid to admit that to yourself. You sound like a loving and caring person. You and your Brother-in-law will be in my prayers. Take care.
    Linda
     
  • shadowryter

    DISNEYHOLIC
    Joined
    Feb 28, 2008
    It's been along time since I posted. But this is where Alzheimer's ends. My dad passed away a little after seven this morning. He was at peace and in no pain. Now he can rest.:littleangel: Thank you for all your replies and words of encouragement.
     

    lisaviolet

    DIS Veteran
    Joined
    Jul 9, 2002
    It's been along time since I posted. But this is where Alzheimer's ends. My dad passed away a little after seven this morning. He was at peace and in no pain. Now he can rest.:littleangel: Thank you for all your replies and words of encouragement.
    I'm so very sorry, shadowryter. :grouphug:

    And relieved to hear that he passed peacefully.

    ____________________________________
     

    Pea-n-Me

    DIS Veteran
    Joined
    Jul 18, 2004
    It's been along time since I posted. But this is where Alzheimer's ends. My dad passed away a little after seven this morning. He was at peace and in no pain. Now he can rest.:littleangel: Thank you for all your replies and words of encouragement.
    I'm so sorry, shadowryter. :grouphug: May he RIP.

    Thank you for being there for him. :flower3:
     

    robinb

    DIS veteran
    Joined
    Aug 29, 1999
    It's been along time since I posted. But this is where Alzheimer's ends. My dad passed away a little after seven this morning. He was at peace and in no pain. Now he can rest.:littleangel: Thank you for all your replies and words of encouragement.
    {{hugs}} I am sorry for your loss. May your dad rest in peace and may you also find peace.
     
  • teruterubouzu

    DIS Veteran
    Joined
    Apr 8, 2007
    It's been along time since I posted. But this is where Alzheimer's ends. My dad passed away a little after seven this morning. He was at peace and in no pain. Now he can rest.:littleangel: Thank you for all your replies and words of encouragement.
    I'm very sorry for your loss. I hope you are surrounded by love and support during these difficult days.
     

    DisneyWorldMimi

    Mimi to a new Disney Lover
    Joined
    Jan 25, 2016
    We found out 3 years ago that my father has Alzheimer's. We actually think it was coming on in 2012, but it was still very mild. In the past couple years he has gone down hill. I went out to visit them while my sister, niece and great nephew were there. My dad thought I was his sister. We had to keep reminding him that I was his daughter. Finally after talking to his sister on the phone, it didn't happen so much. He wasn't too bad then. I went out twice last year and he had really gone down hill. But at Christmas I found that they put him on Aricept and Namenda, but also Zypresta. The Zypresta has a lot of side effects and is rarely prescribed and only if the person has extreme agitation, aggression and hallucinations. My father had none of these. This can also make him more confused. We took him off of the Zypresta and my mom said he hasn't been doing too bad. Kind of does more than he was after they put him on the Zypresta. They could have put him on Celexa if he was having mood swings.
    Below is a good link with lots of information especially about medications. I live in Florida and my parent live in California. My brother is also in CA, but my sister is in North Carolina. Sometimes I feel as if my mom listens to what I am trying to tell her, but then goes with what my sis and bro are telling her. My hubby gave his opinion and she did say that she appreciated him being honest with her. I told her from day one that they could have gotten into an assisted care and gotten settled prior to it getting to the point it is now. But my sis & bro disagreed. Keep him in the house. All this is doing is putting stress on my mother. They are both in the 80's and it is getting harder for my mom. She forgets things and when we visited, she repeated things constantly. And I do mean constantly! "You need to take a cruise; you will be hooked." "make that spare room into a cat room."
    I hate when my sister goes out there because she is a kleptomaniac and always leaves with something from the house, but my mother will not confront her. She thinks she is doing no wrong and that she is entitled to it. But that's another story. :rolleyes: :rolleyes1

    https://www.nia.nih.gov/alzheimers
     

    DisneyWorldMimi

    Mimi to a new Disney Lover
    Joined
    Jan 25, 2016
    Shadow, Sorry for your loss. My father is in good health other than the Alzheimers and thankfully he is not a violent man. But he wasn't violent before either. He was found wandering the streets in their community in just his underwear at 2 in the morning twice. The first time the police brought him back to the house and the second time and EMT who had just gotten off found him and called the police. They took him to the hospital. He had blisters on his feet for over two weeks both times and did not know how he got them.

    He always took a walk in the afternoon and so where he was found was on part of his walking route. Thankfully he knew his last name and since they are the only ones in the community with that last name, they were able to find my mom.

    My mom can't make up her mind what she wants to do. She at first was going to get in to a assisted living and then next thing she had decided not to. One minute it is about the money and the next it isn't. If they would move out here to an assisted living place, I would bring them in a heart beat, but I know they won't.

    I think I am the only one stressing about both of their health. My sister mentions it occasionally, but mainly to try to make me feel like I don't know what is going on. I know exactly what is going on. My brother doesn't talk about it to me, so I don't know how he is handling it. He might talk to my sister, but only because she would really quiz him to see how he thinks my dad is doing. She would love to get a power of attorney over them.

    She tried to take them to North Carolina from the middle of October until after Thanksgiving this year. I flat out told her that it was not going to happen. Last year she took them out 2 weeks prior to Thanksgiving. She had her two daughter, with one of their husbands, 1 daughters 3 year and my parents. The second day in the trip, my dad started asking when they were going to go home. Thanksgiving day, Niece #1 w/hubby goes into labor and has to go to the hospital. After dinner, my sister has to go to the hospital. She is there for a couple days and home for 1 1/2 days and then is back in the hospital. She complains to her hubby that she has had to take care of my mom and dad while they were there. My mom took care of my dad and my niece #2 helped her sometimes. My sister did nothing. I could see this happening all over again. She would have had my dad in such a state that he really would have been confused and would possibly gotten irritated.
     

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    @DisneyWorldMimi It looks like you restarted an old thread that possibly has been forgotten by some of the others. Sounds like things have been tough for your family. I can understand. My father was diagnosed with vascular dementia a few years ago. He's been in a nursing home for about 20 months now. Some days he knows me, other days he thinks I'm another relative, yet other days I have no idea who he thinks I am. It's such a sad disease and it's hard to watch as it progresses in our loved ones. I wish you well on this difficult journey -- please post back how you are doing. :hug:
     

    DisneyWorldMimi

    Mimi to a new Disney Lover
    Joined
    Jan 25, 2016
    I guess I did find an old threat. I just came back from California because my brother contacted me to come out since my mom was sick. She had the flu and then came down with diverticulitis the day after I got there. This came on because she has lost a lot of weight and then with the flu wasn't eating at all. My brother didn't bother to contact my sister because she "had to take care of her two grandsons" while her daughters worked this BSA camp. One daughter is due sometime this month. In February my sister told my mom she would be there in 6 months. My mother's health was declining then.

    When I called my sister on the fact that neither she or my brother wanted my parents in an assisted living home 2 years ago and my mom & I had my dad convinced to move in to one, that my mother would not be as sick as she currently is. Both her doctor and my dad's doctor have told her that he needs to go into a home or it will kill her. My brother wants to wait until she is better. While I was there she had some good days and then bad days. Her bad days were when she thought about being alone or not having me there to take care of them. She would basically worry herself sick. She was in bed for the first 10 days I was there and doesn't remember any of it.

    We took m father off of Olanzapine because I felt it was to strong a drug for him. My brother about had a fit, but after seeing the change that two days made in him, he changed his mind. He saw how alert and how he stayed awake all day compared to sleeping 90% of the day. He commented that my dad was put on it for a reason, because he was a bit argumentative with my mom. I said I under stood that, but that there were milder anti-depressants that he could have been put on. Olanzapine is considered a "Black Box" medication that should only be used for dementia or Alzheimer's patients if nothing else has worked. They try NOT to use it at all. My father has always been a very mild manner person - never mean or aggressive.

    I told my brother recently that since my sister is coming out earlier than originally planned that, between the two of them they better get my dad into a home. If they wait until she is better, it will never happen, she will die first. They have to get him in a memory care facility and get her settled back into her routines that she had before - going to Tai Chi, helping with the Players Club, going to lunch with friends. Get into water aerobics too.

    I also told him that while I know he doesn't like anyone saying anything bad about my sister, that if I find she has taken anything else from my mom's house and he lets her do it. I will call her out on everything that she has taken and will demand that it either be returned or it comes out of her share of the inheritance. He knows she has taken things and has never said anything.

    Everyone of them think that because I am the middle child my opinion does not matter. It didn't matter when I felt they both needed to go into assisted living to get set into a new routine prior to my dad's alzheimer's getting worse. But my siblings didn't want that. My sister takes stuff and my brother turns a blind eye. I called my sister on some things and she could not deny a single thing I said. She could only come back with that she has supported my mom and will support her decisions. She tried to bring up that one of my mom's med is an anti-psychotic, but it is for nausea and to be used ONLY as needed. She didn't use it even once the entire month I was there. I gave her papaya instead. It's all natural and works great for nausea.

    If I have to go back out to help my mom, I will. But it will be with the condition that she gets my dad in a home and then gets her brother to come down for a visit too.
     

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    Wow, sorry things haven't gotten any better for you or your parents' situations. Aging is not an easy process when they begin to need so much help. My dad was on olanzapine, I think they tried it at a couple of different doses, but yes it definitely knocked him out. It's tough balancing the atypical aggressiveness that comes from the disease with keeping them alert but calm.

    Unfortunately the issue with siblings can be a battle. Or not. It may keep the peace if you just let them do their thing, as long as it's not impacting mom or dad's health care. I feel very fortunate that my 3 siblings and I have managed to get through so much without disagreement. Good luck to you!
     

    DisneyWorldMimi

    Mimi to a new Disney Lover
    Joined
    Jan 25, 2016
    Just an update: My brother contacted me on Saturday, September 16 to let me know that my dad had passed away in his sleep in the early morning hours. Hospice and the home that he was in contacted him while he was on a bike ride (he is training for an Ironman in Arizona). I could tell by the way he sounded that he was upset, but had tried to compose himself to let me know. He told those that contacted him, that he would go and tell me mum in person. Once he had gotten up there and told her, he sent me a text letting me know. I talked to my mom later that night.

    I was able to get out to see them in August with my husband and granddaughter. We went to see him one day and were going to go another day, but it ended up not working out. While we were visiting he got teary eyed. I kept telling him who I was and that I loved him. I showed him my granddaughter and explained who she was and how she had been his little helper.

    Both my mom and I look at it as a blessing. He could have lived with this for many years. Instead he only had it from 2013 (possible 2012) to 2017. He didn't talk to my mom or nod when she asked him questions, so she wasn't sure if he knew her. As we left, we stopped at the front door to say goodbye to one of the nurses and we had left my dad in the den/dining area off the kitchen. I turned around and he had gotten up and followed us to the door. My mom said that he had never done that before. She thinks that he might have had a spark of recognition, either in our voices or my face, but something got him stimulated.

    It was hard to explain to my granddaughter, but my daughter and I did it together. We talked about how he had been sick and couldn't remember things or people or how to do things. Then we told her that he had gone to bed on the Friday and when they went to wake him up on Saturday, he wouldn't wake up. We told her how we were glad that she got to know him and her grandma (both her great grandparents). I said that her mom didn't remember meeting her great grandma because she was a little girl when she died. We said now he would be able to sit in Heaven and look down on her and see all the things she does in school, and would be telling his mom about her and how proud he is of her. We told her that he would be her guardian angel. She is going to make a shadow box of things that he has given to her with a couple pictures. She talked the the religion teacher at school and the teacher talked to my daughter. The teacher said that she is handling it very well and understands what happened. She has explained it to other kids in the class too.

    Since my parents have opted to donate their bodies to the Loma Linda Medical Teaching Hospital, they did not have a service for him. I wrote the obituary for their local paper and the paper from where he was from. I know writing it helped me through my grieving process.
     

    limitdis

    Earning My Ears
    Joined
    Apr 7, 2014
    Feed the brain the building blocks it needs. It cannot repair without them. Fat! And cholesterol! It needs both. Also, keep in mind, testosterone is 95% cholesterol. I would recommend high fat and cholesterol diet for any brain injury/disease. Lots of cold pressed coconut oil. Lots of egg yolks! Lots of fish oil.
     


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