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 Grandfather has late stage LBD 
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Joined: Wed Mar 27, 2013 9:36 pm
Posts: 5
Post Grandfather has late stage LBD
Hello. My name is Donny and I'm from the Cleveland Ohio area. I had never heard of LBD until about 2 months ago when my 92 year old grandfather was diagnosed while in the geri psych ward. We first noticed symptoms after he had open heart surgery in 2004 and then was hospitalized again with pancreatitis and shingles in 2005. Every hospitalization since, including prostate and bladder surgery would bring about another "mental" setback for him. We never spoke much his dementia directly with him because he was very stubborn and easily frustrated. His primary care physician stated that he had "moderate" Alzheimers back in 2011 and kept him on a * of meds, none of which helped. He continued to exhibit confusion, and started to have hallucinations. He could no longer sleep in the same bed as my grandmother because he would act out his dreams and start to choke her in the middle of the night.

They were moved into assisted living in June 2012. He appeared stable, though he hated the facility and subsequently leaving the home he had lived in for 65 years, leaving his garden, and not being able to drive. He became very depressed. My aunt remodeled a section of her home to make it handicapped accessible for them. Sadly, my grandmother, who has emotional issues of her own, refused to live in my aunts home and wanted to move, with my grandfather, to an independent living facility. Most independent facilities would not take him because his dementia was progressing very quickly, but she moved anyways and left him with my aunt.

Within the next two weeks the trajectory of his illness was all downhill. He was hospitalzed, received increased meds (which have not stopped the spiral down) and is not expected to only live a few weeks. We have hospice coming in now.

I stay with him during the nights at my aunts house, 3 or 4 times a weeks to help him get to bed, take meds, and oversee him through the night so he wont fall out of bed when he gets wrestless. Im NOT POA; my aunt is and I cant get information from the the doctors obviously. He appears to know me at times. He likes to do the things we used to do such as take drives, go to Starbucks, etc. I carry him to the car and take him for a drive, though most of the time he just mumbles and talks to his hallucinations. He does appear happy though at times, especially when we are out. I just dont know what to expect now. How will he die? Will he be in pain? What can I do? I read so many various things on line connecting LBD to Alzheimers but I dont see the similarities w/ Alzheimers to his case. I'm sorry if I seem like a novice but Im desperately seeking ways to make him comfortable and know what to expect over the next few weeks until he passes. Sorry to ramble. Thank you, Donny


Thu Mar 28, 2013 8:30 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Grandfather has late stage LBD
Welcome, Donny! It is such a blessing to your grandfather that you are stepping in to help. If your aunt will add your name to the medical information release form, you can also have access to your grandfather's medical information. I would suggest your reading all you can on the LBDA information website and then read as much back information on this forum as you can. Sometimes the experience of others gives you a better grasp of the characteristics of this disease. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Mar 28, 2013 10:41 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Grandfather has late stage LBD
Donny - most of us were total novices when we started on this journey with our LO's! It was learning by trial and error and doing the best we could/can for our afflicted LO. Your family is lucky to have you step up and help with the caregiving.

Re: how will he die, will he be in pain, etc. - it is so individual that it's really hard to predict. I can share with you about my own dad and the LOs of several others about the pain issue. Parts of the brain that process pain can get messed up just like parts of the brain that control other things. They can feel pain when there appears to be no reason, or not feel it when there is obvious reason. Ex. My dad had a pressure sore that went down to the bone, for many months before he died. It should have been excruciating, but it wasn't, in fact, he refused to believe he had a pressure sore because he could not feel it AT ALL. A few weeks before he died, he hurt EVERYWHERE, despite the fact that he did not have obvious reasons to have pain everywhere. I couldn't even touch his arms or legs lightly because he would scream in pain. You can imagine what it was like when his diaper needed to be changed, or he needed to be turned over, or his bed made. (he had been totally bedridden for several months by this time)

I asked that he be given the max. amount of morphine prescribed because when he was at the end of a dose, he was in horrendous pain. The nurse said that they needed to be careful about overdosing. HELLO, he was 89 yr. old, completely and totally debilitated, emotionally and physically miserable, and they were worried about an overdose of a med that kept him comfortable mentally and physically? He'd lost about 150 lb. at that point as well and was eating almost nothing. He was at the end of the end.

That said, do what you can to help him be comfortable. The fact that you can take him out on drives is miraculous! Enjoy those outings while you can! Be his advocate, be his doting grandchild and enjoy the last moments together. Read as much as you can here, too. There's a lot of valuable info. and lots of great support. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Mar 28, 2013 4:19 pm
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Joined: Wed Mar 27, 2013 9:36 pm
Posts: 5
Post Re: Grandfather has late stage LBD
Thank you both. Things are deteriorating so fast. I just dont understand why its so fast. Hospice now says he only has a few days. I'm just in shock. On Sunday I took him for a drive. He was not able to walk, but I was able to carry him and put him in the car and wheel chair. He was able to drink from a straw, though he could not eat any solids. I could tell that he was hallucinating in the car because he was mumbling out of the window. He has had a problem over the last 6 weeks or so with forgetting my name and he calls me "Dan" which is cousin of his.

He went in and out of it on Sunday, but he was still alert. I stayed with him Monday night and he was wrestless. He slept all day Monday and Tuesday. On Wednesday I called my aunts house from work and one of my aunts friends who has been taking care of him a lot during the day, when we are at work, said he was laying on the floor grabbing and kicking at his leg and they were waiting for help. He put the phone up to my grandpa and he was mumbling but he knew me and he said he wanted to get a mocha at starbucks (its a thing we do). I told him I would come up on Friday and we would go for a ride again and he seemed happy. I thought I better not wait until Friday so I took yesterday off work and when I got to my aunts he was almost comatose in the bed groaning and moaning in pain one minute but obviously still hallucinating and giggling/smiling or mumbling the next minute.

I really do think he still knew some things and people/voices, etc yesterday even as he was going in and out of consciousness. I told him my mother, her nickname is "chick" was on the phone and he smiled. My aunt and I laid next to him and rubbed his back, and head. I told him "I love you" and he smiled and mumbled "love you Donny." About an hour later as the pain and moaning were getting worse, hospice gave him more morphine and he fell asleep. Hes still sleeping this morning. I know this is almost over but Im just so sad. I had so hoped I could have one more weekend with him. He loved to go out for coffee and he loved to look at plants. He was a huge gardener and we always went to the different nurseries looking at trees and shrubs. He could wander around for hours looking at trees and in the summer he loved to look for vegetable for his garden. I just dont understand how a few weeks ago the doctors were telling us he may have a few months left and now he only has a few days. Im just heartbroken. I'm sorry to ramble but I just dont understand this. I researched or thought I had reasearched Lewy Bodies on line and I just thought we had more time.


Fri Mar 29, 2013 8:08 am
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Grandfather has late stage LBD
That is the thing with Lewy Body, the ups and downs. I had to get a hospital bed and wheelchair for my husband in November, his speech was so garbled you could only make out 1 or 2 words. In the past month, he started talking better (even though most of the time it's to the Lewy People) he is now walking again with assistance. I called an agency and now have physical therapy for him and it seems to be helping. Of course, my husband is much younger than your grandfather, and he never lost his appetite. Hang in there! Your grandfather is lucky to have you.

_________________
Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Mar 29, 2013 9:20 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Grandfather has late stage LBD
Donny,
Welcome to the LBDA forums and I am so glad you found a place to learn more about this disease and I am sure you have read it is also referred to as the Rollercoaster and that's because of the illness changes, one day up and one day down. So take each day that it is good and treat it as his last day and make the very best of it ! I am sure your aunt is thankful to have you help out with your Grand Dad.

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Irene Selak


Fri Mar 29, 2013 11:26 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Grandfather has late stage LBD
Donny - it is possible that your grandfather could rally some and have another week or month or two. That is the weird unpredictability of this disease. Then he may not. I was told that my dad had "probably another month", so I came home to get my stuff and move to his house (500 mi. from mine) and I would live there until he died, so I could be with him every day. 2 days after I left and was packing to move to his house, I got a call from the hospice nurse about "how much better" he was. He'd eaten a full breakfast, full lunch (which he hadn't done in many months), his speech was clear, he was able to talk normally (not just a whisper) and he was actually joking with his CGs AND his thoughts were clear. She said that maybe he actually would live another couple of months because he had rallied so much. Less than an hour later I got a call that he'd died. I couldn't believe the nurse when she told me that! Moral of the story, it is SO unpredictable, so make every moment count, as Irene and others have said. And, he could rally and live a little longer than what they are saying now - it is a possibility but there is just no way of knowing. Big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Mar 29, 2013 12:56 pm
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Joined: Wed Mar 27, 2013 9:36 pm
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Post Re: Grandfather has late stage LBD
Hi everyone. Thank you for the words of support. He passed yesterday at 1:24 pm. I am just numb. I'm in shock. The final stage was so fast. I dont understand how it happened so quickly. I picked up my mother and grandmother to drive them to my aunts home, where he was living, around 10:00 am. His breathing was very labored. Hospice was there and they said it would be within a few hours. We were all by him. I was holding his hand when he stopped breathing.

I had such high hopes for this weekend because the weather was going to break and we were going to get some sunshine and warmer temps. I really wanted to take him out one last time. I thought perhaps I would get a few more times with him. He had extremes. When he was not hallucinating and raging he was very childlike. It probably seemed very strange to many but he became like my child and our roles reversed. The weather has been so cold here and all he talked about the past 2 weeks was his garden, planting his tomatoes and pepper plants, and soaking up sunshine. He said on sunday that if he was around this summer he was going to eat all the tomatoes he could.

I just dont know how life goes on now. I had 30 years with my grandfather which I know many dont get, but he was such a strong player in my life that I dont know what to do with life. I have so many memories and I can honestly say that I have NO bad memories of him. NOTHING negative until the LBD. It robbed him of all dignity. He was such a proud man. He was so selfless and caring. It turned him into a monster at times with raging, name calling, paranoia, etc.

When I look back at the past 8-9 years, I see the progression and I see the warning signs. That said, he made a lot of sense and was very lucid even last summer. We did a lot together last summer. He hated being in that damn assisted living facility but we made the best of it, with getting out on the weekends. He had a huge explosion of anger and crying on Christmas Eve saying "he was in a concentration camp" and "he was in a prison" and that is when he moved in with my aunt. I thought it would get better, but it was all down hill and so quickly.

Yesterday, after he passed, and I drove everyone home, I stopped at a nursery we went to just to wander around and see the new plants. The nursery is about 5 mins away from there old home, which we sold this winter. I went to the house, knocked on the door because I was going to introduce myself to the new owners and tell them that the man who built this house, with his own hands, had just passed and please take care of it for him. No one was home. I did notice on the side of the garage, one of my grandfathers old tires we forgot in the garage was waiting for the trash. Also, was my old bicycle that he fixed for me when I was little. He put a new seat on it, a speedometer and a little kick plate. I dont know what they were going to do with the bike, but I took it. I put it in my truck and drove off. It was a part of him. We would ride our bikes around the neighborhood after dinner at nights in the summer. It was a part of him. I just dont know what to do now. I'm so sorry to go on and on but I'm just so sad. I miss him so much


Sat Mar 30, 2013 7:43 am
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Joined: Wed Mar 27, 2013 9:36 pm
Posts: 5
Post Re: Grandfather has late stage LBD
Hi everyone. Thank you for the words of support. He passed yesterday at 1:24 pm. I am just numb. I'm in shock. The final stage was so fast. I dont understand how it happened so quickly. I picked up my mother and grandmother to drive them to my aunts home, where he was living, around 10:00 am. His breathing was very labored. Hospice was there and they said it would be within a few hours. We were all by him. I was holding his hand when he stopped breathing.

I had such high hopes for this weekend because the weather was going to break and we were going to get some sunshine and warmer temps. I really wanted to take him out one last time. I thought perhaps I would get a few more times with him. He had extremes. When he was not hallucinating and raging he was very childlike. It probably seemed very strange to many but he became like my child and our roles reversed. The weather has been so cold here and all he talked about the past 2 weeks was his garden, planting his tomatoes and pepper plants, and soaking up sunshine. He said on sunday that if he was around this summer he was going to eat all the tomatoes he could.

I just dont know how life goes on now. I had 30 years with my grandfather which I know many dont get, but he was such a strong player in my life that I dont know what to do with life. I have so many memories and I can honestly say that I have NO bad memories of him. NOTHING negative until the LBD. It robbed him of all dignity. He was such a proud man. He was so selfless and caring. It turned him into a monster at times with raging, name calling, paranoia, etc.

When I look back at the past 8-9 years, I see the progression and I see the warning signs. That said, he made a lot of sense and was very lucid even last summer. We did a lot together last summer. He hated being in that damn assisted living facility but we made the best of it, with getting out on the weekends. He had a huge explosion of anger and crying on Christmas Eve saying "he was in a concentration camp" and "he was in a prison" and that is when he moved in with my aunt. I thought it would get better, but it was all down hill and so quickly.

Yesterday, after he passed, and I drove everyone home, I stopped at a nursery we went to just to wander around and see the new plants. The nursery is about 5 mins away from there old home, which we sold this winter. I went to the house, knocked on the door because I was going to introduce myself to the new owners and tell them that the man who built this house, with his own hands, had just passed and please take care of it for him. No one was home. I did notice on the side of the garage, one of my grandfathers old tires we forgot in the garage was waiting for the trash. Also, was my old bicycle that he fixed for me when I was little. He put a new seat on it, a speedometer and a little kick plate. I dont know what they were going to do with the bike, but I took it. I put it in my truck and drove off. It was a part of him. We would ride our bikes around the neighborhood after dinner at nights in the summer. It was a part of him. I just dont know what to do now. I'm so sorry to go on and on but I'm just so sad. I miss him so much


Sat Mar 30, 2013 7:43 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Grandfather has late stage LBD
My condolences, Donny. You were very lucky to have so many years with your grandfather. Not too many people are able to experience that. Take care of yourself. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Mar 30, 2013 8:30 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Grandfather has late stage LBD
I'm sorry, donny! :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Mar 30, 2013 9:36 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Grandfather has late stage LBD
Donny,
Please except my condolences to you and the family, now you get to keep all the wonderful memories you have of him !

_________________
Irene Selak


Sat Mar 30, 2013 3:30 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Grandfather has late stage LBD
so sorry danny.. hope your wonderful memories will help you thru this rough time.. he sounds as tho he was a wonderful grampa. im sure he was so proud and happy to have you, in his life!!
take care..
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Mar 30, 2013 11:58 pm
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Joined: Wed Mar 27, 2013 9:36 pm
Posts: 5
Post Re: Grandfather has late stage LBD
Thank you all. I told some friends last night that I joined this group, only a few days ago, thinking I would get some ideas on how to deal with his passing over the next few months. Some of the doctors had told us he had a few weeks last week, but I knew his personality was that of a fighter. He loved life. Last Sunday, on what was our last drive together, he was hallucinating badly in the car. That said, he had a moment when he told me that he wanted to live to be 94. lol. He also said that he was going to eat all of the tomatoes and peppers he could possibly eat from his garden this summer. I have read through other posts by many great people on here and I wish I had a better understanding of LBD. Its so volatile. There doesnt seem to be any rhyme or reason to the disease. Its all over the place.

I dont understand why he was diagnosed only a month ago and now hes gone. How did the primary care physician not know that he had LBD? They kept calling it Alzheimers and all they would give him was aricept when everyone knew he was having hallucinations. He really didnt have much of a "memory" problem. He remembered things. He would get things confused but he knew basic things in his life that occurred. He had a problem recognizing faces and placing them with names but he knew the names and who they were. For about the past 2 years, he couldnt dial a phone or tell time. His reading was poor as was his writing. He had fixations on the weather, thinking it was cold or snowing when it was 70 or 80 degrees. He would put his hat with the dinner plates or rip pages out of books. He still had a decent memory though.. He knew he liked to garden. He knew what food he liked. He knew all about music on the radio. There is a station here in Cleveland 91.5 fm, which is all oldies music that he loved. He knew every word to ever song and would sing along. He knew he loved Gone With the Wind and would wait for it to come on and stay up and watch the entire thing so many times over the past few years. He could still mow his grass up to a year ago. He like to rake his leaves and weed in the garden. Even 3 or 4 months ago, he would still get up every morning and made oatmeal and toast for himself and my grandmother. sometimes he would burn the toast but he tried. He was very high functioning even though he was hallucinating constantly. I just dont "get it." I dont understand how it happened so quickly.

I know I'm grasping for whatever I can, but I just want to know that he had some peace or some understanding that I loved him at the end when I told him that I loved him. I know it sounds cliche but this man was like a father. He taught me everything from tying my shoes to driving a car and I just wish I knew what he was going through. If I had known it was LBD, I would have done more. I should have pushed for more testing so we could have gotten more treatment. I just thought "hes getting older and forgetting." I got so frustrated at times with him, but he couldnt help it. He was fighting a battle and didnt want to burden his family with his battle. Its just unreal at this point. I dont know where life goes from here? I just hope for others sake that they dont take a moment for granted. Wrap your arms around you loved ones with LBD and tell them you love them. It just goes so quickly.


Sun Mar 31, 2013 8:31 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Grandfather has late stage LBD
Donny, an earlier diagnosis might have yielded different treatments but probably would not have prolonged his life. Developing LBD at such an advanced age often determines the prognosis. You seem to be an articulate and sensitive writer. Perhaps, once the shock and pain have subsided, you could write a book or article about your grandfather. This would be therapeutic for you and a legacy to his descendants. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 31, 2013 10:22 am
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