Someone out there must have a relative with Alzheimers...not just me...

Hello everyone.  It's me again :)

I've been struggling lately with something that I fell I should be use to by now.  Alzheimers.  My grandfather has had Alzheimers for many, many years (diagnosed 15 years ago, I was 4)  I don't have very many memories of him remembering who I was.  He has a slow progessing version of the disease. 

All my life I knew he was sick but it wasn't until I was about 12 that I finally realized what this ment.  My grandfather never called me by my name, I was always darling or sweety, little did I know this was because he didn't know my name.  What made me realize?  First, he started flirting with one of my girl friends. At first I thought he was joking around but he wasn't...my grand mother had to come and explain to my friend that he has Alzheimers and doesn't really know what he's doing.  Then he didn't recoginize my father (his son) or any of his children for that fact.  I know, this story sounds funny, I even laugh about it sometimes...other times I cry.  Eventually I realized how serious this is. 

Many times when I have gone to visit my grand parents I have had to go into the bed room or the bath room to hide my tears from them, not out of shame but out of respect.  I don't think my grand father needs to see me cry.

My grandmother (granny) fell last week and she broke her hip, she and my grand father have been now seperated for the first time in 62 years.  I went to see my grand father in his hospital (because he can't take care of himself).  After 2 hours of me talking to him about what ever came to mind and him just sitting in the chair staring (at something, me maybe, but I think he was staring through me) I was about to give up and just go home but instead I asked if he wanted to go for a walk.  He looked me dead in the eyes and said "That would be nice." I was so excited!
We went on a walk together and for the next 90 minutes he actually was in a conversation with me!  He came and went a little in the begining but he actually talked with me.  He wanted to know about my fiencee' and he wanted to know ALL about the up comming wedding.  He told me of his experience in the Navy (some was a little far fetched) but regardless HE SPOKE IN CONVERSATION.  Finally 4 hours later I decided it was time for me to leave,  I grabbed my purse and stood up and he looked at me and said "Are you going somewhere sweety?"  and I said "Yes Papa, its time for me to go home."  he said "Well its a shame to see you go" and I said "It's really hard to leave."  I gave him a hug and a kiss and as I was walking out the door he said "Laura...When will I see you again?" and I said "I'll see you tomorrow Papa, I promise."

Not only did he talk he called me by name.  If you don't have anyone with Alzeheimers you probably don't understand why this is so exciting but it really is amazing, a miracle! (if you believe in them)

Now, I'm sitting here typing this, in absolute tears because it was just amazing.  I wanted to know if anyone else has a loved one suffering this disease.  If so, share your stories here...if not well thanks for reading, if you have any questions about the disease or comments regarding it post below and I'd be happy to help out if I can.

I can only hope that someone else is dealing with this.  Botteling up my emotion about my grandfather hasn't helped me yet so I'm hoping sharing might. Thanks!

I am a home care provider and have had a client with Alzheimer's.  Yes it can be very difficult to deal with emotionally.  My heart is with you.  Your experience reminded me of the book The Notebook.  Yeah I kno they made a movie but I have never seen it.  I read the book a few months ago and I just loved it!  I think you would enjoy it too.  Anyone who knows someone who suffers from Alzheimer's would like this book.

Enjoy all the time you have with him, take him on more walks or just sit quietly with him, I believe in my heart that they know you are there even if they can't communicate with you.  But remember to take care of you too, cry if you need to and don't be ashamed.  It is hard to watch a loved one who is sick.

If you ever need to talk I am always here to listen.  Take care of yourself and hang onto the wonderful time you had with your Grandfather.

Ah that's fantastic! I'm so happy for you! Just reading that made me tear up [sounds a bit like the Notebook].

Hopefully you'll have another opportunity like that, but even if you don't, it's definitely amazing that you had this one.
I've never had a relative with it, but my mom works in a nursing home so I've seen plenty of people with Alzheimer's. It breaks my heart, but at least he knows that you're there for him =]

I want to go and buy 2 copies of The Notebook...havn't decided just yet though.  I want one for my personal library because EVERYONE have recommended it and the second one because I was thinking about giving a copy to my grandmother. 

I need to know, does this seem reasonable?  Is that a good gift for her?  or is it going to make her depressed and/or cry.  I want to know because its already tough on here.  She loves to read but I havn't previewed this book yet.  Any suggestions?

bump :)

Tough call to say for sure regarding your grandmother  and the Notebook without knowing her personality for sure. Does she deal well with his disease, or is it really tough and sad for her?

Maybe you could read it together.  It really is a touching book.

I'm very familiar with Alzheimer's. My grandmother had very strong dimentia, very close to Alzeimer's. She gradually started to sort of check in and out of reality. It was very interesting but moreso sad. There were times when she seemed to forget me while other times she seemed to know who I was but could not talk any more whe I visited her at the nursing home. Mostly she mumbled in her later days. Pre-mumbling though, I remember visiting her at the nursing home and she would ask me if I wanted a glass of milk from the fridge and tell me about what she and my (deceased) grandfather had done and eaten that day. Well, there was no fridge with milk or grandfather anymore, but in her mind, she was living in the past - like 15+ years ago, at her old home with my grandfather and showing hospitality to me, her grandaughter. It was so sweet, and I would just sort of go along with it, so that she didn't feel embarassed, and because it really did sound like a nice place to be - back at her and my grandfather's home with their wonderfully cooked meals.

Occasionally, I would wonder if it really made a difference that I or my father (her son) visited her. My father actually visited her several times a week. My grandmother passed away a few years ago, so here are a few thoughts from me - take it or leave it.

My family has a strong Christian heritage background (a little more liberal than conservative though for what it's worth), so my father felt like despite grandma's perplexing dimentia/sickness, she had taken great care of him and lovingly parented him. He felt like she was such a blessing in his life and although there were discouraging visits many times due to her memory loss, he unconditionally loved her and considered it an honor to care for her. He felt God wanted him to still care for her - visit her at the nursing home, take her for walks, etc. We didn't even know what she did or did not understand at one point, but interestingly even though she could not verbally communicate well any more, at moments her eyes seemed to look at me like I looked like a famililar person or simply a nice person coming to visit. (And I certainly had my share of days where she did not seem to have any interest in my visit to her nor know really who the heck I was).

Either way, we liked to try to keep a "glass half full" perspective and believed that she still appreciated whatever kind of attention/affection we could provide to her, even if it was a "connected" or coherent and meaningful visit for only 1 of 10 visits. I occasionally had a couple of meaningful visits like you had with your grandfather, so I think your grandfather in some form appreciates any act of kindness you do with him, even if there are days where he thinks you're just a nice stranger taking him for a walk. Otherwise, he could have just sat alone all day. Just making his life a little more pleasant in his final days seems meaningful on both ends (his and yours), plus in the scheme of life, you can appreciate his personality for what it was most of his life and share these memories together with your parents/familiy members.

I'm really happy that you continue to visit your grandfather even as hard as it may be at times.

Reading it together might be a good idea, I think she'll enjoy it, but theres never any guarentees.  I'm so sorry to hear about your late grandmother.  I met someone with dementia yesterday at the nursing home, it was incredible to see someone that had a disease so close to what my Papa has but was still able to hold on a converstion (even though it was set in many MANY years past) the gentelmans wife told me he's 94, WOW!  Not everything about these visits are negative, I suppose.  Its just hard, not sometimes but ALL THE TIMES

Thank  you so much for sharing your story, its hard to go through but life is going to keep going no matter how hard I try to stop it (after I figure out how to stop it I'd like to rewind it and go back to when I was 4 for a few days)

My heart goes out to you  and the pain you must have gone through, did you?  How did you feel through all of this happening?  Was it hard for you to leave?  That seems most difficult to me (as mentioned below)
Thanks again!
-Laura



My thoughts
Even though I'm on vacation from work right now, and I know that they are only 4 miles from me (at the new nursing home).  And I know that I'll see them again the next day as soon as I get around, I find it the hardest thing in the world to leave.  Everytime I break down and just cry for 10 or 15 minutes, then when I finally have my composure about myself I start to drive (I make sure I'm out of earshot/vision of my grandfather first though).  Its weird, I don't know why I cry so much when I leave, I never did when he was home with is wife...that's probably it.  He's not with ANYONE, the only people that talk with him are his visitors (me :(  )  He has 4 sons but none of them can easily come and visit during the week.  So when I leave I feel almost like its my responsibility to stay and keep him company, give him his meds, feed him, and put him to bed before I go.  These are all things that I did when I use to care for him when he lived with my grandmother and she needed to go grocery shopping or had an appointment.  I don't know, but I think its just going to be an adjustment period for me...at least I hope.

I think the other thing that gets me every time is the face that because he's in late stages there's no saying if he'll wake up again or not...

My grandmother is happy, in 3 months she will have been married 62 years but she looked at me yesterday in her hospital bed and had tears in her eyes and said "Laura, I pray, everyday I pray, for the Lord Above to just take him.  I want him to go home, he needs to go home, I love you grandfather so much and it pains me to see him like this.  Is that bad?"  I said no granny its not.  and she says "Will you pray with me?"  I had to excuse myself right then!  I can't pray for the Lord to take my grandfather (here come the tears again).  I know, its selfish, but I want him to stay because deep down inside I believe (more so just wish) that one day he'll magically be all better.  Or that we'll have another great day like we did the other, but there is no sign oof that as of my last visit.
I wasn't willing to pray with my grandmother, I told her that I'm not ready yet to wish Papa into the Lords hands, she understood completely.

I hate this disease.  It's terrible and my heart goes out to anyone with a loved one with it.

bump?

Hello. I just read your last post and it made me cry a bit. I'm not really sure what to tell you, but I hope that your grandparents get better, my grandma get better and everyone's loved ones who suffer get better too.

My grandmother had dementia and there were days she didn't know who I was or where she was. She often asked for pappa but he died when I was 5. She loved my kids very much and she so wanted to see them walk and talk. She died when Austin was 6 and Anna 4. She ALWAYS knew who they were by name, even if she thought she was is Arizona on the ranch or Maine at the beach house.

My mom had dementia & a list of other illnesses and it was very hard to watch her decline. I have to admit that I often asked God to take her home so she wouldn't suffer. Gramma was 79 before her symptoms showed, mom was 56. She died May 28th at the age of 57.

Enjoy every second with them, hang on every word and get lost in his eyes. I often see Grandma's eyes when I look at my Anna - she is so much like her. Eyes are the gateway to the soul.

Your post reminded me of my Gammy who died of Alzheimer's.  She lived to be 89, but the last few years she really didn't know who anyone was and was living in the past.  On my last visit with her before she died, she asked over and over what was going to happen to my aunt who has suffered from hearing loss all of her life.  (My aunt had a successful career as a librarian.)

Gammy made exquisite knitted lace tablecloths, doilies, and other pieces when she was herself.  As the disease progressed, you could tell that she wanted to work on something, but she would unpick her previous works of art looking for mistakes until my grandfather took the piece away from her.  She would also walk around holding a stuffed toy elephant.  I still feel sad; it's a terrible way to go, and she was really lucky that she had her husband and family to the end.

All you can do is try to remember the good days, and think of the person that used to be there.  *hugs*, it's a terrible disease for everyone around the affected person.

My grandma has Alzheimer's, currently 83 years old. We seem to have managed to slow the progression with medication (Aricept was one of the best but cause nausea, the Exelon patch gave her hives, Razadyne is the current medication which is working fairly well).

If The Notebook is the one I'm thinking of by Nicolas Sparks, it's heart wrenching but incredibly sweet.

Thank you everyone for your posts.  Papa is 83 years old also and his mother died of Alzheimers at 94.  My grandmother doesn't want him to go through the same but at the same time I don't want him to go.

I want to make this thread somewhere for people to share.  Thank you so much, hearing about other people in the same position is really ..almost relaxing for me.  Thanks everyone.
-Laura

Bought the book (The Notebook) ..started reading it...I think I'm going to read with my grandmother tomorrow and see how she feels about it after the first chapter (it's all I've gotten through).  If she likes it (and of course I'll read the back of the book to her so she has an idea of what its about) then I'll continue to read with her/give it to her and finish it later.

Saw Papa again today, he didn't remember me but I think he recoginized me.  When I walked in he took my hand and walked me over to the bird cage and we sat watching them for a while.

The new carehome has some bird cages in common areas and everytime we go for a walk (over the last 4 days) I've stopped and showed him the birds, some days he's more interested than others but today he was intent on them.  It was pretty cool, I don't know if he did this because he though I liked watching them, he remembered that I would show them to him, or he just enjoys them.  The nurses said that he sat infront of them for an hour after I told him good bye yesterday so, it makes me think maybe he does actually remember.

Still really hard to leave, but I only cried the first time today...not this evening.  Hopefully that will get better, anyone know if it does?
Thanks a ton for everything!
-Laura

One other thought, familiarity breeds recognition. My grandma often gets names or places mixed up, but seeing me every week gives her a sense of stability and she recognizes me. We work on her bills, her grocery shopping, sometimes laundry, filing, all the day to day tasks that we do in our own lives that she has a hard time doing on her own. Also make a list of the bills that must get paid and when they need to get paid and make sure you check them off it it's applicable to your situation.

My grandmother is conginively fine.  She really doesn't struggle much with the day to day things (until she broke her hip...now its just the getting around thing that she struggles with)  My grandfather is cognitively impaired due to the Alzheimers, but he has never been the one to do those things.  Thank you for the concern.  I know that the bills are taken care of for the current month and I think its my fathers responsibility to take care of them for the rest of the time, he's the "landlord" lol not really but we own her house and practically gave it to her.

Thank you for your concern.  I think we've got this area covered.


Today I went in with a group of my friends to visit her and found her rather distressed.  The staff was 90% sure that she had developed a blood clot due to the surgery.  The prelimanary results say there are no signs of this but the symptoms are all there.  The swelling in her leg increased over night and the hip to knee is almost HOT to the touch, during excersize more (of course) but it is still very warm when she is fully relaxed.  Its weird but there seems to be no HUGE problem according to the.  They don't know what's causing it though.  Any thoughts?

Thanks
-Laura

today was the first day I didn't go see my grand parents (either of them) since they were put in the nursing home.  I feel....weird.  I want to go but I've just been so busy today (I started work and then dinner and then scheduling for fall classes and what ever else!)  It was weird but almost nice...I odn't know

This is more or less a bump post then anything else....any comments?

I stumbled upon this forum cuz my dad has recently had weird memory loss. He actually forgot what we were talking about in the middle of our conversation today and he's been referring to me by my aunts name. It's not alzheimers yet since he hasn't been diagnosed, but I'm pushing for the testing in the hopes that we can catch it quick enough cuz he's only 61.

But, I just thought I'd leave a note saying that this forum is really beautiful to read. It's given me a bit of hope that even if it is alzheimers, it's not the end of the world. Close, but not quite.

EDIT: dad had a seizure last week which resulted in a CT scan and the diagnosis of a benign brain tumour known as a meningioma

A good neurologist is essential when it comes to diagnosing cognitive disfunction.  Get him tested as soon as possible, many things can be treated with medication.

Our family has struggled with my father-in-law for nearly 15 years now. My kids have had all the same emotions as you describe as well as a little resentment over the fact that they feel cheated he's not been well. My oldest daughter remembers grandpa well, but the youngest is 17 and she doesn't.

He has pulled some big stunts like going missing for hours, running over people in Wal-mart with shopping carts and kissing strangers. He would never have done things like this before. It does make me sad to see such a proud and extremely intellegent man live the remaining years of his life like this.

Most of all we try to remember the good he has done and how ingueneious and handy he was. It's really hard to face the fact that it runs in our family-him and all his sibilings save one so far and knowing my husband and children could face the same. Still, my mother-in-law has been his sole caregiver all these years, diapers and all. She makes me feel like she's a superhero and I can be one too!

I love the comments everyone is leaving.  It's amazing to know that other people are dealing with the same things as I am, my heart goes out to you all.

I havn't made it down to see my grandfather for about 5 days now.  I miss him terribly but I know now he's in good hands (even if I don't want to say this out loud yet).  My grandmother has been going down every 3 days to visit with him.  She is in the front of the nursing home and he is in the back.  She told me today that she cried on the phone with one of the nurses and the nurse actually walked Papa down to her for about 45 minutes.  Amazing, how much these people care.  Papa has seemed happy everytime I've gone to see him, I always ask "They bein nice Papa?" and his response is always the same, he'll glance in my eyes and then stop for a moment, look over my shoulder and say "of course....yup....uh huh."  Now, I don't know if this is him being part of the conversation but it is interesting to see this reaction.  He hasn't recoginized me again but I  hope this comes again.  It really brightened up my day to have him recoginize me back a few weeks ago.  I hope to have more days like this but I also know that the days are numbered.

BIGBONES: By all means encourage him to be tested for this, there's no saying that this is what it is but theres no saying its no.  There is not a cure for Alzheimers but there are medications to slow down the progression of the disease if that is what he (if capable) or the family decide to do.  You and your family are in my prayers.  I learned long ago not to look at Alzheimers as a disease that will kill him eventually but as a beginning to a new chapter....even though every time he turns the page he'll have to go back to re-read it he'll still get the same enjoyment out of it as he did the first time.  If that makes since.  It makes me look at it in the light of humor.  Makes this easier to deal with.

1967jeriann: Papa has done some pretty crazy things in the past (nothing too bad since we realized how bad the disease actually was and kept closer watch).  The first thing I remember him doing was flirting with a girl friend.  The second, we were getting ready for a party at my house and Granny went to the bathroom leaving Papa in the living room for a few minutes.  When she came back he was missing.  We didn't know where he went and eventually found him at the neighbors house trying to get into their car and calling "Donna, hurry up, we're going to be late!"  Looking back we laugh, then it was scarry. 
My grandmother is a superhero to me, I don't belive that I could take care of someone like Papa for very long, but here they are for the last 15 years, and more to come as soon as she heals.  WOW!

God Bless!
-Laura