Alzheimer's - Need some advice/help/shoulder to cry on

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  • @Hstrylovr, there's so much good info here! Bless all the BKs for offering support. Caregiving is tough, tough work. So glad you are finding some outside resources such as the senior center and the VFW. Maybe some interaction outside the family will do him good. I suspected my late mom was slipping into dementia before she died; I was glad she was spared it, because she valued her mind- and we did, too. Keep coming back here; we are good listeners.
  • Pafuchi said:
    First off, big hugs to you and your family. This can be a difficult road for everyone concerned.

    As far as advice, a few things come to mind:

    1. Call the doctor's office and ask to be put on the list for last-minute cancellations. I think the sooner he gets in to the doctor, the better.

    2. Contact the Alzheimer's Association (www.alz.org) for information on diagnosis, treatments, and safety.

    3. As carlatheviking stated, please take care of yourself. There are resources through the Alzheimer's organization but you can also take advantage of counseling services offered through your health insurance or perhaps through your employer's Employee Assistance Plan (EAP).

    4. See if your mom and grandmother might be open to talking to someone. Not because they're doing anything "wrong" but because there are strategies they can use to manage your grandfather during erratic phases.

    All the best to you and your family...they're lucky to have you.
    A resounding YES to all of these suggestions.  Getting your granddad evaluated for Alzheimer's or other form of dementia can be the first step for your grandmother, mom, you and all of your family more information and access to resources in helping your granddad and family cope as best as possible with this situation, which is heartbreaking and incredibly challenging.

    My mother had Alzheimer's, and I understand how difficult this is for your family.  Your granddad doesn't hate anyone; he has a condition that means his brain isn't functioning well, and that condition is causing him to behave as he sometimes does, and to say these things that are so upsetting and hurtful.  Watching someone you love slowly change and disappear is painful beyond words.

    If I could, I would hug you.
  • Everyone has given wonderful advice and resources for you.  I'm sorry that you're having to deal with this.

    Our family issue was not dementia, but post-stroke care, and the caregiver problems were probably somewhat similar. Something we struggled with was accepting this:  it is ok to reach a point where you are no longer capable of caring for your loved one the way they need to be cared for  And it is ok to turn to professional care, to residential care, to make sure that your loved one has the support and assistance they need.  Obviously you are not there now, but if you do reach that point in the future where you need it for all your well being, fuck anyone who judges you for it.
  • CourtneyA said:
    Everyone has given wonderful advice and resources for you.  I'm sorry that you're having to deal with this.

    Our family issue was not dementia, but post-stroke care, and the caregiver problems were probably somewhat similar. Something we struggled with was accepting this:  it is ok to reach a point where you are no longer capable of caring for your loved one the way they need to be cared for  And it is ok to turn to professional care, to residential care, to make sure that your loved one has the support and assistance they need.  Obviously you are not there now, but if you do reach that point in the future where you need it for all your well being, fuck anyone who judges you for it.
    Amen to this. Caring, competent home health aides, nurses, or a good residential facility can be lifesavers for all.
  • @Hstrylvr Just checking in - how are you? You don't have to respond, of course - your plate is rather full at the moment. Just wanted you to know we're still out here sending you positive thoughts and energy. :-)
  • Dementia is a bitch! Dealing with my Grandmother's illness took a huge toll and almost wiped out my own parent's marriage. I took her in for a few months and it was harder than raising children. I don't wish this on my worst enemy.
  • @PlasticMouse, thanks for asking!  This week was fairly good, no outbursts or crying that I could see.  My grandpa was in a fairly good mood and happy.  I found a movie that had talking dogs, Beverly Hills Chihuahua 3.  He loves those type of movies.  This franchise especially as it has chihuahuas.  We're Mexican.  We watched it together until he fell asleep.  

    My best friend from high school was visiting, and she has been like a sister to me and my entire family loves her.  She stopped by on Easter and my grandpa loved seeing her again.  He was even joking around with my grandma and she made him his favorite foods.  Add to that I made 2 dozen colored eggs for him, he had a great Sunday.  

    With baseball starting I am hoping he can get interested enough to watch game son tv.  He loves baseball and softball.  He is also going ot he senior centre more and is talking about eating there and meeting up with people.  The VFW Korean War Vets had their monthly meeting and he went.  They are having a picnic later this month, so I am going to make him cookies so he can take them.  

    I did buy that book, "the 36 Hour Day" and will start reading it this week.  We called the dr to see if we could get him in sooner, but so far no cancellations.  If we can keep him happy and active, but not too much so he doesn't get tired and depressed at being old, then I'm hoping he will be ok until his appt later this month.  

    @GeoDiva, it is a bitch.  I hate seeing him depressed, angry, or just scared.  He was never the smartest person, he never finished grade school but had to go to work to help out his family.  But he was always the kindest person, animals and kids loved him.  I'm hoping with me staying at home for awhile it will help both him and my family.  He was not happy when I moved out years ago, and i am really hoping we can get him on medication that helps him, so when I move out again later this year, it won't be horrible.  I'm worried though.  
  • I'm glad you had a good week, and it sounds like you've had a great support network around. Old friends are the best. :-) 

    Try not to worry too much about what the future holds - the progression of this disease can vary so much, and you'll wear yourself out trying to anticipate every possibility. I hope you continue having good days. Let us know if you need to vent!
  • It really is awesome to have such a great community here.  
  • Hstrylvr said:
    It really is awesome to have such a great community here.  

    Amen!
  • @Hstrylvr ; It's wonderful that you and your grandfather had such a good week.  It's a very good sign that he wants to engage more with the senior center and with the Korean War Vets. There must be something about talking animals, because my mom totally goes for that type of thing. 

    @GeoDiva ; I concur. I recently updated my Facebook status as "Dementia sucks".

  • Gah.  Tomorrow was supposed to be my grandfather's appointment with the dr, but apparently my mom didn't tell him until today and he freaked out.  He refused to go and started yelling we wanted to put him in a home.  He says he's not sick, just old.  My mom backed down to calm him down, but now we are back where we started.  I'm starting to get very angry at my family for not doing more.  To me it's like they are just doing the bare minimum and not acknowledging they have to try harder and longer.  It seems they are just concerned about legalities and paperwork, and not about actually helping him.  Sure the legal stuff is very important just in case, but in the meantime we have to actually try and help him see if he can function better while still at home.  

    I'm so angry right now.  I flat out told my mom that she needs to go to his dr and talk to him about both him and her speaking to my grandpa about this, so he doesn't get too upset.  I will make the damn appointment myself and take time off of work if my mom doesn't do it.  I'm getting so stressed right now as I am dealing with what could be a major health issue for myself, as well.      
  • That SUCKS.  Could you tell your grandpa that because he's getting older he needs to be checked up regularly so they can catch anything before it gets bad?  Use blood pressure as an example?  I don't think most people get emotional about blood pressure.

    Or, do you think you could frame the appointment as "I want to make sure I can do everything to keep you healthy, so we need to go to the doctor together so I can make sure I'm doing everything necessary for you?"
  • Hstrylvr

    I am so sorry that your parents backed off and your grand dad won't be seeing a doctor as soon  as he should.  I am not a counselor, just a 65 year old woman who has been to this and other rodeos before, but I hope that what I am about to say to you is helpful.  Honey, you are not powerful enough to fix this situation - not the Alzheimers, not the family dynamic, not the resistance of your grandfather to going to the doctor.  If you could, of course you would fix it, but you are not the primary mover here.  So, what you can do is suggest the right path, visit your loved ones and take the burden off as much as you can - stay with the ailing grandparent to give your parents a rest, talk to him about the old days which he may remember better than yesterday etc.  But most importantly take care of yourself.  Letting this sad situation eat at you will not help, so while you will worry and be concerned do not assume the guilt that comes when we think we can come in like a superhero and fix things.  Just do the best you can and know that you will then have no regrets if you follow your heart.  

    Love and concern,

    Shibori Girl
  • @Shibori_Girl, yeah I'm doing my best to not take it on all by myself, but I do have to try and push them in the right direction.  I talked to my mom about how we need to approach this going forward.  She has agreed, but I know I'm going to have to keep on her too to make sure she is on board.    

    @carlatheviking, I went out to breakfast with him today, and he mentioned needing help as he was getting older.  I did mention that there were now special doctors who treated just elderly patients to make everything was going ok for them.  He didn't get scared, so maybe this is hope.  
  • @Hstrylvr, you are doing a great job! Good that you are addressing this with your family. I just didn't want you to beat yourself up. (You). Hugs
  • Hstrylvr said:

    @carlatheviking, I went out to breakfast with him today, and he mentioned needing help as he was getting older.  I did mention that there were now special doctors who treated just elderly patients to make everything was going ok for them.  He didn't get scared, so maybe this is hope.  

    Oh yay!  That IS good news!
  • @hstrylvr, that was a great approach you used with your grandfather. He is really trusting you, and that's good. I told my mom as she aged that I was her "secretary." When I would visit, I'd say, "I'm going to take care of my secretarial duties," and I would go thru mail, balance her checkbook, make appointments, whatever. Whatever it takes- make it a game, suggest that you two are a team, - anything to make things roll. And @Shibori_Girl has given good advice- do what you can, and stand. So many aspects can't be fixed- that's the nature of the disease. Just bend with the wind the best you can. ((hugs))
  • edited August 2015
    Y'all!!

    I attended a really terrific conference today.

    If you have anyone going through Dementia and Alzheimer's. Get an iPod. A new Shuffle is under $50. If they can still communicate learn their favorite songs. Not just genre, SPECIFIC favorites of theirs. Try to load it up. At least an hour of continuous music.

    You will reach them. You will see how music can fire up neural receptors. Being joy.

    Watch (Netflix) Alive Inside.

    At the very least go to
    www.musicandmemory.org

    My mind is racing right now!!!

  • Talk to other family members to get song ideas.
  • @BitingPanda  Excellent.  I hope a lot of people in the US will watch Alive Inside (streaming on Netflix now)!

    How sad was it when a doctor said that he could write out a prescription for a $1,000/month antidepressant, "no problem; no questions asked" – but getting someone a $40 iPod?  That would be difficult.

    Such powerful moments, watching the eyes of the Altzheimer's patients change as they heard their favorite songs.
  • @BitingPanda my grandfather doesn't have Alzheimers, but music is definitely the best way to reach into his dementia still.
  • That documentary is everything!

    But even if you aren't dealing with these issues, starting a music therapy routine, and having your elder go out of their way to learn new things, try new things, shake up their daily routine, all of these things build new neural pathways in the mind. Ways to "get around" the tangles and snarls that present themselves in the brain as dementia and memory loss develop but are far from "symptomatic". 

    Fascinating stuff. 
  • Reminds me of and HBO documentary from a few years ago about Alzheimer's patients where one patient had been part of a singing group.  He didn't know his family, but he would jump right up with his group and sing every song with them. 
  • Also,

    Karen Stobbe was a presenter yesterday. I've never laughed so hard at a work event. She was AMAZEBALLS. 
    (and her funny, hot, improving honey? hello!) Anyway. Here is another resource for all of you dealing with Alz's

    www.karenstobbe.com
  • @BitingPanda, great ideas!  

    I do something similar with my grandpa.  We try and watch one of his favorite movies each week-end.  He has trouble remembering if he took his pills 5 minutes ago, but he knows all his favorite scenes and lines form the movies.  Especially The Three Amigos.  I also went out and bought a bunch of dvd's with old spaghetti westerns on them.  He loves that genre, and will just sit and laugh, while I make him popcorn or a sandwich for dinner.  
  • edited August 2015
    Hstrylvr said:
    @BitingPanda, great ideas!  

    I do something similar with my grandpa.  We try and watch one of his favorite movies each week-end.  He has trouble remembering if he took his pills 5 minutes ago, but he knows all his favorite scenes and lines form the movies.  Especially The Three Amigos.  I also went out and bought a bunch of dvd's with old spaghetti westerns on them.  He loves that genre, and will just sit and laugh, while I make him popcorn or a sandwich for dinner.  

    You are an excellent granddaughter.  He's lucky to have you!



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