Please...help me to understand Alzheimer's

Discussion in 'Coping and Compassion' started by shadowryter, Jun 1, 2012.

  1. SleepyDeb

    SleepyDeb Mouseketeer

    Joined:
    Sep 16, 2012
    Messages:
    124
    Yes, that is what happens with ALZ. They have moments of lucidity, which lulls you info a false sense that things are getting better. Those moments will come less frequently as the disease progresses.

    I wish I could tell you things will get better. They won't. This is why no one person can do it on their own.
     
  2. Avatar

    Google AdSense Guest Advertisement


    to hide this advert.
  3. Caseheidi

    Caseheidi DIS Veteran

    Joined:
    Aug 28, 2012
    Messages:
    1,011
    My MIL also has ALZHEIMER'S, and we ended up placing her in a care facility. She just became too much for us to handle, and it just progressed so fast. It is sounding to me like your family may need to consider this option.
    A teacher at the ALZHEIMER'S Society put it best for us when he related this illness to a dance. The "Dance of Dementia" he called it. The patient is the only one who knows the steps, and we as loved ones and care givers can only try to keep up. Remember, by placing a loved one in a care facility, you are just keeping up with the dance steps.
    Does your Mom have Power of Attorney? If not, you need to take steps to get it. With all you have shared, your Dad is not able to make decisions now and is a danger to himself and others. I would really encourage you to tour some facilities and check out this option.
    Also look into Medicade. There are many rules and protections in place so that your Mom can still have her home if your father needs Medicade to pay for his care. Mostly you need to prepare for this eventually.
    Mostly now, you need to take you time, and couple time. Being a care giver is exhausting, demanding work. Look into place who offer assistance. Someone to stay with Dad whole you get a break. You are not alone. Sounds like most of us are either there with you or have been in the past. Turn to your support network as much as you need to.
     
  4. SleepyDeb

    SleepyDeb Mouseketeer

    Joined:
    Sep 16, 2012
    Messages:
    124
    Shadow, I sent you a PM.
     
  5. shadowryter

    shadowryter DISNEYHOLIC

    Joined:
    Feb 28, 2008
    Messages:
    5,780
    Last night my dad took off again. He said he was moving out and going to find an apartment. Our neighbors happened to be outside at the time so he decided to stop there first. He rambled on about how I am stealing his money and I had his license taken away so my husband could have his car. I ran after him and asked him to come in as it was getting cold out. He wouldn't listen to me and took off down the street calling me all kinds of horrible names. I told our neighbor that dad has Alz. Wouldn't you know his mom does too so he understood. My dad turned back and shouted in front of everyone that he was going to take all his pills and kill himself. My husband managed to get him into the house and I had to call 911 again. The officers called an ambulance to take him to the hospital for evaluation especially since they found a screwdriver hidden under his pillow. For that instant I didn't feel safe in my own home.
    He is still in the hospital and this morning he told everyone there how he flattened the tires of his car and took off the plates an hid them. He also took the battery out of the land line so I couldn't call the police. I have my cell so it doesn't matter. His psychiatrist told me medically he was fine but that he could not come home. He's being moved to a psych ward and will undergo tests. I am so saddened by this but had no other choice. I slept last night for the first time in days.
     
  6. SleepyDeb

    SleepyDeb Mouseketeer

    Joined:
    Sep 16, 2012
    Messages:
    124
    Yes, you did have to. I'm glad you will start to get the help you need.
     
  7. robinb

    robinb DIS Veteran

    Joined:
    Aug 29, 1999
    Messages:
    31,466
    I read your apology thread and saw this one today. I can't offer any advise, but I can offer your lots of {{hugs}}. You need to do what's best for your father and the rest of your family. It sounds like the psych ward is the first step.
     
  8. kacaju

    kacaju DIS Veteran

    Joined:
    Mar 4, 2007
    Messages:
    3,778
    I am so sorry to read about everything you have been through lately.
     
  9. Caseheidi

    Caseheidi DIS Veteran

    Joined:
    Aug 28, 2012
    Messages:
    1,011
    Sorry that things have escalated to this point, but I am happy for you that you have the help and support you need right now. I wish I could tell you that everything will be better now, but I would be lying. This situation often results in your best choice being the hardest one to make. Stay strong, and get some rest in this well deserved break you have. I hope you find a good resolution soon and that your Mom is well on the road to recovery. Your Dad's illness is nasty, and we just have to remember that he is just not on control, and sometimes we need the help of professionals.
     
  10. Woth2982

    Woth2982 DIS Veteran

    Joined:
    Oct 11, 2008
    Messages:
    1,099
    I am so sorry you are going through this. It is such a hard disease. Remember to be patient. This disease transforms its victims. My grandmother was very docile all her life, but when she would get an infection she would wander and get combative. Thankfully I never had to witness that. As hard as it was, once she was put in the "lock down" unit at the Alzheimer's care center things got better. She was able to have round the clock help, and because they are literally locked in, we didn't have to worry about her wandering. **Hugs** if there is anything I can do let me know!
     
  11. QuiltTeddy

    QuiltTeddy DIS Veteran

    Joined:
    Jul 31, 2004
    Messages:
    1,658
    My mother had alzheimers for a number of years. It is hardest on the family members. The caregiver gets the brunt of the hate. My mother was just horrible to my father. She would kick him for no reason, hide from him and just be verbally abusive. After two years he finally reached the end of his rope. He commented that he felt like he was "sitting in the house waiting to die". He could not even go out to the mailbox without having to suffer the abuse when he came back in the house. The most difficult thing was the fact that he would not allow my mother to drive. Forbidding and preventing driving takes away their independence and thus creates even more anger.

    My mother ended up having to be put in an assisted living, locked unit, for her own safety. She was there for almost two years. As the disease progressed she had to be moved to a full on nursing home where she lasted only 2 months.

    Alzheimers is a dreadful disease that not only robs the person suffering of all dignity, but robs the family members of what should be "the golden years".

    It has been a year since my mother passed and although they say "it gets easier", I don't see that happening. Know that you need to have a lot of patience and, yes, you will continually repeat things. Know that merely answering with a short answer is the best thing to do. As soon as you give your response, it will be forgotten, so it's not necessary to be elaborate with your response. Know that it is better to merely keep answering the same thing over and over because that will create less anger. Know that the drugs won't stop the disease, but merely delay the inevitable. Know that although you will find yourself becoming frustrated, it is even more frustrating to the person suffering with Alzheimers. They know their brain isn't functioning properly, but they have no control over it and are probably more frustrated than you are.

    Most importantly, cherish every day because one day you won't have your loved one. Sending hugs across the miles and also know, you are not alone!
     
  12. shadowryter

    shadowryter DISNEYHOLIC

    Joined:
    Feb 28, 2008
    Messages:
    5,780
    Hi all....the last time I posted my dad was taken to the hospital to be evaluated. He was there for a about a week and then was transferred to a locked down facility for dementia patients. Another battery of tests were run, more to check the physical than the mental. They were supposed to keep him there for about 2 to 3 weeks but then it was decided that his Alz was more advanced than once thought. Since he did not have a Health Care Proxy I had to seek Guardianship which was difficult because it was the time of year when things slow down where DH works and money is a bit scarce. The hospital did pay for the lawyer to handle this. From there they helped me to find a place where dad would be spending the rests of his days.

    The nursing home is lovely with wonderful people who care deeply for their patients. In the meantime, I am taking care of my mom who is coming along quite nicely after breaking her hip. She came home on December 21st, a few days before my dad was transferred to the nursing home. We had a nice Christmas but we missed him terribly.

    Since I am my mothers sole caregiver I have not seen my dad since December 5th. We do however talk to him on the phone. He asks how "all" the kids are doing? There are only 2 of us, me and my brother. A couple of weeks ago he didn't remember who I was though he remembers my mom.

    About 2 weeks I go I received a call from the nursing home in the middle of the night. They said when they went to change his bedding his nurse found blood soaked sheets and he was rushed to the hospital. They ran tests but the one he needed was a colonoscopy and the prep caused injury to his heart so the procedure was stopped. The bleeding also stopped but he needed two transfusions.

    He is now back at the nursing home and doing well as can be expected. I had a lengthy discussion with his doctor which advised me to place a DNR on his chart. That the chances of survival should his heart stop was next to none. I discussed this with my mom. This is the hardest decision I may ever have to make. I've cried a lot over the past few days and especially today. I can't believe how fast he is declining. How do you set forth something like this? How do you not feel guilty?

    I'm sorry this was so long but I felt those of you who have been with me with your advice and well wishes deserved to know what was going on. Thank you for your support.
    Linda
     
  13. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,154
    :hug: to you and your family.. That must be incredibly hard.

    My father in law has been recently diagnosed, and although we all thought it would be such a diagnosis, it is a little shocking..

    Thinking and praying for you.
     
  14. Deesknee

    Deesknee <font color=blue>When we were kids (long time ago)

    Joined:
    May 10, 2004
    Messages:
    4,055
    I am sorry you have to go through this. I wish I had a magic wand to make the guilt & pain disappear. I lost my Dad just over 1 mnth ago. Just days before he drove his car to my home and sat with me, had lunch, even a couple of laughs. He entered the hospital, with urinary issues, but ended up getting pneumonia ..again. he went to ICU within a day or so of being in the hosp. That is when the doctors had the same conversation with us. The only warning I will give anyone is to make the doctors be specific as to what they are referring to with a DNR. With my Dad it was breathing issues. They put him on a BIPAP machine, then wanted us to sign a DNR so if he couldn't breath when they took him off they wouldn't put him back on it. We said yes. Well, when he came off it, he was sitting up, eating, laughing having a great conversations within 10minutes. So, we had to decide if we/he would want to be put back on the BIPAP again. We had them adjust the DNR to be more specific. He could go on BIPAP, but not int-abated, or feeding tube. no cpr if his heart stops. Then after a couple more times on the BIPAP Dad expressed his discontent with being on the BIPAP machine. (he actually snapped the hose when my brother told him his breathing wasn't going to get better & we didn't know what to do. So... we told the doctors to make him comfortable. But, today I wish I had been more specific about that too. They medicated him so much to make him "comfortable" he couldn't communicate. I wish they had just given enough to take the extreme pain away, so we could have asked what he wanted & he could have been specific. I still feel the guilt, but I know he would not want to live on machines. I think of conversations we had over the years. I know he wouldn't want to be on "life support" in any way. Try to think back to comments your Dad may have made over the recent years, before the Alzheimers. I hope you & your Mom are able to find inner peace to help you through this MOST difficult time. How wonderful you are to be this close to your parents. Again, I wish I had a magic wand. If you would not be offended I will enter you & your folks into my prayers.
    Bless you.
     
  15. QuiltTeddy

    QuiltTeddy DIS Veteran

    Joined:
    Jul 31, 2004
    Messages:
    1,658
    I know first hand how Alzheimers slowly eats away at the family members, while it slowly breaks down all organs in the person suffering from the disease. Fortunately (and speaking from experiencing the breakdown in my mother), the person suffering from the Alzheimers is not aware of how their body is breaking down. Once they hit a certain point, the downhill slide is quick. Hopefully during this quick downhill slide, they are kept pain free. The pain, though, is felt by the rest of the family and it never really goes away. I wish I could tell you it gets easier as time passes. It's now a 15 months since my mother passed from this disease and it's still very fresh. The only comfort is knowing that my mother is no longer suffering from the debilitating disease.

    Stay strong and keep thinking of all the wonderful memories you have from the past. Those memories will help you through the darkest of days. I will keep you and your family in my prayers.
     
  16. RnbwSktles

    RnbwSktles DIS Veteran

    Joined:
    Feb 13, 2013
    Messages:
    870
    I wish I had found this thread sooner so that I could have offered you some support along the way! :flower3:

    My FIL has AZ and the last few years have been very rough on DH's family. I think they are finally starting to look at putting him in a nursing home, which I truly think is the best decision.

    How my MIL is handling the situation has caused a lot of friction between DH and myself. My in-laws are still young (around 60) so this disease has really put a damper on my MILs lifestyle :sad2:. She has been "retired" since she had DH about 30 years ago so she's very active socially. She is very responsible with making sure he takes his meds and sees his doctors, but she is easily stressed out. She likes to go out dancing a few nights a week, and a few times a year will take a vacation somewhere with a friend. Two summers ago she went for 3 weeks. Occasionally, it's just a weekend retreat. Sometimes she will just leave him at home all day because she doesn't want to deal with taking him out. I understand the need to get away once in a while for her own sanity, but it ends up putting a lot of responsibility on DH and I. My DSIL is currently living with them, but works full time and then is only home about 4 nights a week (never on weekends).

    DH feels guilty that DFIL gets left alone all of the time, so he often brings him up to our house. We live on a 15 acre "farm" so there is always some kind of yard work to do. It used to be that you just gave him a rake and he'd be fine for hours, even if he wasn't actually being productive. Now, DH has to constantly watch him because he will break random things, throw things away, or randomly decide to go to the bathroom in a very inappropriate place. DH spends most of these days yelling at him out of frustration. This is basically every weekend.

    I think the biggest problem is that his family overestimates what he can do most of the time. If he can't figure out to turn on the TV or put his pants on, they try to reason with him and say "Do it yourself, you know how to. Show me". 98% of the time this just leads to arguing. DH will give him a task to do, but then yell at him when he breaks something. :confused3:

    Not surprisingly, this all gets worse when DMIL is gone on a trip.

    I feel awful, but I'm kind of ready for the whole thing to just be over.
     
  17. shadowryter

    shadowryter DISNEYHOLIC

    Joined:
    Feb 28, 2008
    Messages:
    5,780
    Hi, I feel so sorry that you are going through this too. For me things got so out of hand with my dad. He got violent and wanted me and my mom dead. The police found an 8 inch screw driver hidden under his pillow.:rolleyes1 The police became involved when he took his car and disappeared one night. I was beside myself with worry and to make matters worse my mom was in a nursing home/rehab because she broke her hip barely a month prior. The police visited my house for three consecutive nights and finally took him out of the house for observation.

    He is in a nursing home now and doesn't even know who I am. He declined so fast. It was hard for me because the last words spoken between us was ,"Dad please come home. It's getting cold out here." To which he responded, "%itch!" In front of the whole neighborhood. I didn't hold it against him. I knew it was the AZ talking, not him.

    I get it with the unable to dress, turn on a TV, leave all on the lights on in the house and the hot water faucet's running. I had to do a safety check every night. I know it is frustrating when they can't do something as simple as get dressed. Instead of telling him to do it himself I just helped. I explained what he did wrong but jokingly. It was like talking to a child.

    I tried to put myself in my dad's place. He was a brilliant man: an electronics engineer. Imagine what went though his mind when the simplest thing was so hard to do if not impossible. It breaks my heart that I was the one who obtained guardianship because he couldn't make any decisions. I put him in that nursing home.

    I understand that you MIL is still young and wants to have fun but she should really consider what's going on with her DH. I know that you need to get away sometime because the daily task of taking care of someone with AZ can be all consuming. My DH, me and my DD go on vacation in the fall every year. This year DH and I are hoping to sneak away but not without the help of my DD who has volunteered to stay at home and take care of her grandmother. Believe it or not my mom broke her hip for the second time in less than five months and is back at rehab, so she can't be left alone. I now have two parents in nursing homes.:sad1:

    The decision will have to be made soon as what to do, but for me placing dad somewhere where he would have around the clock care made sense. I feel rested now and I have no regrets. It was the right thing to do. I wish you and your family all the best. Take care.:goodvibes
    Linda
     
  18. Auntie L.

    Auntie L. Mouseketeer

    Joined:
    Apr 27, 2008
    Messages:
    302
    Hi everyone. I'm Linda from MA too. It's been good for me to read all these posts and I'm in awe over how much you've all endured. I'm taking care of my 83 yr old mom with moderate Alz. I'm lucky because she isn't violent and she gave up driving pretty easily. I guess I feel sorry for myself because I have little time for myself (I'm the only caregiver) and my mom is so emotionally needy. I'm pretty much all she has - I have a brother but he's involved with his own family (he helps out a little with some paperwork, etc) Right now, I'm still able to work (though I'm a little nervous to leave mom.) I sleep at her house every night ( on the Aero bed -LOL) We're starting to look into nsg home options - what a process! I know it will be hard and I admit that I feel guilty, but I also know my limits. Thanks for letting me vent and I'll keep all of you in my prayers. :-)
     
  19. shadowryter

    shadowryter DISNEYHOLIC

    Joined:
    Feb 28, 2008
    Messages:
    5,780
    Hi Linda, Please feel free to vent. I think that was all I did when I started this thread. Alz is a cruel disease. I wouldn't wish it on anyone. As for me my dad is now receiving 24/7 care. He can't dress, bath or eat on his own. He gets around with the aide of a walker and two people need to assist him even with that. The worse part for me is that he doesn't know me anymore. There might be a faint glimmer of recognition but then it's gone in an instant. I am now taking care of my mom as her health is slowly failing. Two broken hips (broke the same one twice) within five months of each other, heart failure twice within 4 weeks, first requiring a pacemaker. She is fragile and dependent on me as I too am the only caregiver though I have a brother in Miami who can barely take care of himself. I'm basically alone though I have some help from my husband and daughter. She unlike my dad is sharp as a tack. It's her body that's failing. Just like with my dad I'm frustrated and just plain tired right now but I push on and just pray for the best. Take care of yourself because your mom needs you right now. I'll be thinking of you and know you're in my prayers.:goodvibes
    Linda
     
  20. Auntie L.

    Auntie L. Mouseketeer

    Joined:
    Apr 27, 2008
    Messages:
    302
    Thanks Linda. You definitely have a lot on your plate. It so tough to see a loved one go through what your mom is - esp when her mind is so keen. She's lucky to have you.
    I just love the support on these boards- and it helps me get my Disney fix when I feel trapped. Haven't been to WDW in 2 years, so it helps to read these posts and watch the videocasts. And I was fortunate to be able to attend the podcast at the NE meet last month (Mom was having a good day, thank God! ) It's the little things that are getting me through right now- hope you all can find some too. Take care, Linda - it sounds like you're doing a great job! Looking forward to hearing more from everyone.
     
  21. Disneygranny1973

    Disneygranny1973 Earning My Ears

    Joined:
    Apr 4, 2009
    Messages:
    33
    Hello Linda,
    I was looking for you to see about some designs and come across this thread. I am so sorry you are having to deal with AZ. I know exactly what you are going through as my dear mother had this. She was a fun, intelligent and caring person. AZ turned her into a crying, confused person, who stayed depressed and angry. During her last year, she no longer knew us, didn't recognize simple instructions, couldn't feed herself..etc. The process is slow and painful to watch and heartbreaking to accept. I will never forget the first time I came around the corner at the nursing home and watched her turn her head away as if I was just another person. That hurt beyond words. I immediately stopped walking and started crying. I tried to take care of her at home, but I was so afraid to sleep at night because she would get up and wander about and I wouldn't even know she was up. Many mornings I got up to find her sitting on the couch, fully dressed and sound asleep. It would amaze me and terrify me at the same time. I never heard her. Soon she became combative and wouldn't eat, shower or take her medicines. She would say, " i'm the mother, you don't tell me what to do", it seemed she could remember her role, but not the importance of her meds..she got so mad at me one day because I wouldn't let her get in somebody's car that had come to visit her..she pitched one more fit. My husband and family sat me down and told me that I didn't have what she needed here at home. She needed round the clock care that I couldn't give. The first of many hard decisions I had to make. But when we took her to the NH, she thought she we had taken her to a hospital and thought the aides were nurses and she did whatever they told her she needed to do. She would eat, shower..everything! I was so glad we made that decision. Towards the end, she began having seizures. They said her brain had entered into it's final stages of function....a CAT scan proved them right..it had completely atrophied and the end was imminent. She still lingered on for 6wks from that point. I had to make the decision not to put a feeding tube in. Of course she had made previous arrangements to cover that decision, but I still had to decide when I wanted them to quit trying to feed her and just let her go. She was a diabetic as well. She had an IV and I told them when it occluded (time to change the needle) that we would just remove it and let her go. Each step towards the end was harder and harder to make. You would think it would be easier, having time to prepare, but it wasn't. I found comfort in knowing that I had actually said goodbye to my mother a long time ago...
    Sometimes I still wonder if I did the best I could for her, knowing full well I tried to..and if you will let it, the guilt will eat away at you endlessly and unmercifully...but then I think...you know what? One day, I plan on seeing her again, and i'm gonna ask her..."how did I do Mom?" LOL...
    Sending prayers and good thoughts your way.....(thanks for listening)
     

Share This Page