View unanswered posts | View active topics It is currently Wed Nov 26, 2014 10:43 pm



Reply to topic  [ 19 posts ]  Go to page 1, 2  Next
 My dad 
Author Message

Joined: Tue Aug 30, 2011 1:54 pm
Posts: 3
Post My dad
I am 45 years old and my dad is 76. My mom is 69 and she lives at home with him. He has Dementia with Lewy Bodies. This disease seems to be going so fast and my mom can hardly keep up. She starts getting use to him in some ways and then he starts doing or saying more things. It is so hard for her to have to deal with. They have been married 50 years and she's been through alot with him but never in her wildest dreams did she think this would happen. Neither did I.

He halucinates alot. It seems more and more these days. Tonight for the first time he refused to eat his food that she had gone and gotton him cause he said he wanted it. He said he wasn't eating anything that had minnows in it. The food had no such thing but to him it did. He see's children and women and all kinds of people and animals in the house that are not there. The other day he wrote a note and was acting like someone else wrote it when he asked moma if she saw the note?

We had to get the guns out of the house cause at one time he woke her up with a loaded 22 in his hand cause he said there were all of these people in his room. This was at 3am. Luckily she convinced him noone was there and made him put the gun away. All of the guns are now out of the house. This person that does these things well he's not the man I have always called daddy.
I call this guy Lewy. I don't like him and I don't trust him. I worry all the time that something might happen to my mom. I don't what's next I just know we are on a rollercoaster and we don't know what is around the next bin. My Grandmother had alzheimers disease but it was nothing like this. She did alot of things but it wasn't this back and forth stuff . I can't explain it it was just very different.

I wish I could help my mom more but I dont' know how. I work two jobs and it's very hard. So if yall have any ideas let me know. Oh yeah and pretty soon we have to go out of town to something very important my mom and me. We do not know what we are going to do. We can't leave him alone and its' not wise to take him. I think we need to get a caregiver but not sure how he'll take that even for a few days. Mom is afraid he's gonna get real upset over that.


Wed Aug 31, 2011 10:43 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: My dad
Stacy, I can hear the fear in your writing. I'm so sorry. Yes, you have come to the right place. I will not be the one to guide you because there are several others who will wecome you to this forum and let you know that Lewy Body is bad but in the beginning there is help in the form of certain medicines and other ideas to make the nights and days more bearable. This new group of caregivers will answer your questions and welcome you... They are so intelligent and knowledgeable and have been or are where you are with this disease. Besides they are wonderful people. And watch for anything Robin and Irene have to offer. Those two have been caregivers in the past but still offer much help.

I am also a former caregiver but these newcomers are so adept at caring for their loved ones and willing to share. I took care of my husband for twelve years and still miss him like everything. I have already said everything I know on previous entries but new ideas are being printed faster than I can keep up.

Bless you for standing with your parents and best of luck with it all!

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Wed Aug 31, 2011 11:09 pm
Profile

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: My dad
Welcome to the forums, Stacy! You're right this is a roller coaster or some kind of confusing "thrill" ride anyway. My mom was doing really well until the past several days when she has got an infection in her leg. When Lewy's patients get sick or have an infection of any kind their confusion gets worse, so my mom doesn't know where she is right now, wants to know where the bathroom is in "this place" ( her home), and when my dad will be home from work ( my dad died in 1979). Once the infection clears up, I know she'll be herself again, although probably not as good as before the infection. the best advice I can give you about having a caregiver stay with your dad while you and your mom are away is to get that person over there as soon as possible so your dad will get used to the person before you leave. There is a wealth of information to be found on the boards, I have been going through and reading all of the old posts as I'm able to. The people who are active on this forum are so helpful and so understanding, they have really saved my sanity. You're in the right place, wish you didn't have to be here.
Ellen

_________________
Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Thu Sep 01, 2011 12:02 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My dad
Stacy, welcome to the forum! I'm so sorry you have been swept into the Lewy web and am very sorry for your mother and father, too. My husband did very similar things and I was afraid of him. He is still totally delusional and still hallucinates but is immobile now, is wheelchair-bound and has been in a nursing home since December. You and your parents will be in my prayers. God bless you for being a caring daughter. Seek out help from an Area Agency on Aging or some other social services agency as soon as possible. Hugs!

_________________
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 Sep 01, 2011 1:04 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My dad
Can you find a good MD and get your poor dad on a medication regimen that will help the hallucinations?


Thu Sep 01, 2011 1:25 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My dad
Welcome, Stacy.

We call the intruder in our lives Lewy, too. ("I'm afraid Lewy might trip you, so let me carry that.")

It was very wise to get the guns out of the house. You never know what Lewy might do, even if your dad is the gentlest of men.

How long ago was he diagnosed? What kind of doctor is monitoring his care? What meds is he on? This information helps us put situations in context.

I second Pat's advice about the Department on Aging in your state and/or your county's social services agency to explore the help and options available to you. And Ellen has a good idea about getting used to a caregiver before the need arises, if that is possible.

And you are right. Though they are both dementias, Lewy Body Dementia is not at all the same as Alzheimer's disease.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 01, 2011 1:31 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: My dad
Stacy, One of the hardest parts of this disease is the constant fluctuations. The right balance of meds can help but it takes time to get there. This forum has been a life line for me, we could have written most of the stories. Your mom will need a lot of support, mentally, emotionally and as time goes on, physically. Encourage your mom to join this forum, the caregivers have been there and will give lots of support.

Take Care and welcome,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Sep 01, 2011 7:37 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: My dad
Welcome Stacey. I'd like to add that the sooner you can learn more about this disease the better. There is a wealth of info. on this forum. We are all here because we either are or have been caregivers of people with this disease. Information is powerful, and it will help guide you through this process a little more smoothly, not that it is going to be easy. But, perhaps the experiences of others will help you get through processes more easily, help you understand that there may be meds than can help (and which ones), and provide you the moral support you will need. Your mom would probably find this forum very helpful too.
We know what it's like, so come here often for info. and 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 Sep 01, 2011 8:42 am
Profile

Joined: Tue Aug 30, 2011 1:54 pm
Posts: 3
Post Re: My dad
Well my dad goes to the VA in Dallas. He's on meds but I don't think they are doing anything. He hasn't been on the anti-hallucinagenic drugs very long. I can't remember the name of it right now and i will get the name from mom and write it down so that i can give you the info. I don't think he's on the right meds though and not the right amount either. His halucinating is getting worse every day and well his physical abilities are going as well. my mom now has to help him get his shirt on and this morn. his shoes. She had to help him into bed too and she hasn't had to do that. His getting around is getting alot harder for him.

I am afraid of what is to come I will admitt that. I know mom is too. I worry that he'll fall if noone is there cause he has been doing that too in the past weeks. His depth perception is not good. I thank god mom has the keys to his truck so he can't drive cause the Doct.'s did tell him no about that cause i told them he wouldn't listen about that unless it came from a doctor.

We are going to go to a support group meeting (our first) next Wed. I am so glad we are too. I want to get info. and meet people. It makes it so much easier to deal with this just knowing that there are others who understand what you are going through cause there are so very many who cannot.

I promise to keep coming here and posting cause yall I need input and someone to tell this stuff to. Like I said I have two jobs and full time one and a part time one so alot of days i'm coming home and changing clothes and going to the other one then coming home getting in bed to get up in the morn. to go to the other one. Inbetween all of this i talk to mom and she tells me of what all he's doing. It gets very stressfull cause i have to be strong for her but inside it is breakng my heart.

I have to go now but I will get back with yall and again thank you so much for your help. I so very much appreciate it.

Stacy


Thu Sep 01, 2011 8:07 pm
Profile

Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: My dad
Stacy
I am sorry you have to be here on this forum. Your Dad sounds a lot like my husband at first. A wise nurse from the clinic where my husbands doctor is advised me to start a journal. I did start writting in a journal. We were completly blindsided with this disease at first. It seems like it started over night with nasty hallucinations. He also had kind of an obsession with guns. We left the guns in the house but put them up high and removed all amunition from the house. Ocassionally he will ask me what happened to his guns, and I show him the cases and that seems to make things ok. The guns will be useless with amunition.
To make a long story a little shorter, after getting my husband stable on medications, I continue to write in my journal. As every one says, the fluctuations are horrific. One day I will think to myself, "theres nothing wrong with him", then next day he is way off again and I feel so depressed. This is when I go back to my journal and read about how he was 2years or even 3 years ago now and I realize how important it was to get him on the proper medications. I don't know how long this stable stage will last, but I do know I cherish every good day.
I hope you can get your dad on some medications that will help him. I also feel that a neurologist that is a specialist in LBD is important.
Mary


Thu Sep 01, 2011 8:25 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My dad
Stacy, I hope they don't give him Risperdal [risperidone]! It nearly killed my husband and is usually contraindicated in both PD and LBD. He tolerates Seroquel all right, though, and it helps immensely. He still hallucinates but is much calmer, not as agitated or violent.

_________________
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 Sep 01, 2011 9:14 pm
Profile

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: My dad
Hi Stacy,
You have definitely found your way to a great resource, both for links to good advice for caregivers and for moral support. Sounds as if you and your mom are facing some really tough challenges!

One thing that is really important is getting your dad under the care of someone who is a specialist in Lewy body dementia. I looked at the list of physicians at the North TX VA in Dallas, which would probably be where he is getting care. They only listed 3 physicians who are board certified in neurology (a starting point, though no guarantee that they will have specific expertise in LBD!) Even my mom's neurologist, who is an internationally known dementia specialist and someone I have worked with for many years and respect highly, talked to a couple of our colleagues in other places when she was first diagnosed. I don't know how the VA handles referrals or second opinions, but there might be someone nearby who could help get your dad on the right track with meds, if there is not someone right at the VA (Dallas is, after all, a pretty big city with some excellent hospitals.)

The other thing that really helped us, as caregivers, was some of the references that people on the forum have suggested. We got a copy of "A caregiver's guide to Lewy body dementia" by James and Helen Whitworth, and it has been very helpful, especially for my dad, who is the primary caregiver. He and my mom are 95, still in pretty good health, but finding it harder to cope with this. Lots of great suggestions in the book.

I'm so sorry to hear of how hard this is for you, and hope that the friends and advice here will lift some of the burden. Take care of yourself, too...
Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 02, 2011 12:44 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My dad
Hi, Stacy. Welcome.
Laurel is absolutely right. You need someone who specializes in Lewy, or at least a dementia expert. How did you get the Lewy Body diagnosis? Was it a neurologist? A neuropsychiatrist? This is important because some of the medications used for other forms of dementia are very harmful in the case of LBD. You may have to do some fighting to get the right care or attention, but it is worth it.

As your Dad is a veteran, have you checked into benefits that might help with additional care? Or financial benefits? Don’t necessarily ask the VA directly. They like to have some intermediary. When I checked into benefits for my Mom the first time, they told me that they couldn’t deal directly with me and referred me to either the county, the VFW or American Legion. My Dad never joined the VFW or American Legion, and I wasn’t ready for going to the county at that time, so I didn’t do too well on the application and Mom didn’t get benefits. Even if your Dad didn’t join the VFW or American Legion, talk with them. They may have some help for you.

Go to the county social services or senior services. Do it now, even if you don’t need financial help immediately. They have access to resources of many types – and can maybe set you up with someone to care for your Dad while you and your Mom are out of town. And talk seriously with them about your situation. If finances aren’t an issue, they could be in the not-too-distant future. Also, talk with someone about legal documents, such as Power of Attorney and Medical Directives (aka living wills). If you can still have them done, don’t delay. These documents could make all the difference for you and your Mom.

It sounds like your Dad is someone who could soon become unmanageable, because of size, temperament or just plain Lewy. If it were my Dad instead of my Mom. I suspect we would have been in the same situation. (Daddy was wonderful, but was big and could have a temper when he thought something wasn’t right.) There will come a time when your Mom can’t take care of him at home. Start looking for places you can move your Dad to, assisted living or a nursing facility with dementia care, very soon. Some of them even provide respite care (short term care for things like the trip you and your Mom are taking). Check these places out carefully. Start at medicare.gov and do a search for facilities in your area. They provide ratings based on inspections that they do yearly. Don’t worry right now about how they will be paid. If resources are a problem, the larger facilities, and some of the small ones, have social workers who will help you apply for aid, if needed. You need to at least consider these for your Dad’s care and for your Mom’s health and peace of mind. Maybe even her safety.

With Lewy, you are going to have to make hard choices and will need a lot of strength and courage. The support group is the right move. Even if the first meeting doesn’t go well for you, keep going and give it time. And keep coming back here. Also, give the search function on this forum a try. Just search on any word that comes to mind and see what you get. You’ll find years and years of experience and even some humor. Yes. Lewy can sometimes be funny and a little laughter helps a lot.

Read some of what you find here with your Mom. And encourage her to come here. We seldom bite and often cyber hug.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Sep 02, 2011 9:37 am
Profile

Joined: Tue Aug 30, 2011 1:54 pm
Posts: 3
Post Re: My dad
Hi well I know it's been a few days since i have been on here but have been spending every day since Sat. at the VA Hospital in Dallas. My dad fell at home and my husband had to go pick him up and after that he just went down fast. Mom had to help him to the bathroom and he had an accident and then he was halucinating like crazy and he couldn't walk. So I called the nurse help line and was told to bring him to the emergency room.

Well yesterday they figured out that he had a uti. Sat. he was not mentally here and Sund he was somewhat. I talked to him and fed him and he could talk to me but was halucinating still. Today my mom and I went over there and well lets just say I have cried most of the day. When we went in he was sitting in a chair with his eyes shut and he wouldn't open them and he would talk some but made no sense. The Doctors did come in later and he opened them for a bit but then closed them again.

He was soo not there. I know he won't recover but I just want it to slow down. I think mom and I have to go see about a nursing home cause well she can't take care of him like that. She can't lift him and well he cannot stand alone. They have a depends on him. It's just ripping my heart out to see him like this. I am all my mom has during this cause my brother doesn't want to see him like this.

My mom and I are still gonna go to that support group meeting. Moma is lost and scared. We don't want to put him somewhere but we don't know what to do. It's just so hard to see him this way.


Wed Sep 07, 2011 12:21 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My dad
Yes, it is so heartbreaking! I am so sorry you--or any of us--are having to go through this, much less our poor loved ones! :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.


Wed Sep 07, 2011 1:16 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 19 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr