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 I'm all flumoxed 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post I'm all flumoxed
My LO is still in the early stage, I think. I say this because he can still move about and function pretty good. Eating is getting sloppy. He gets confused when he's dressing in the morning. I get him in the shower, but he can do the rest himself and get out on his own. He still shaves now and then and stays by himself when I go bowling twice a week. He has no concept of time and will ask about time and day several times a day. He can't retain anything I say or follow even simple direction but he remembers that he has pills to take or the gardener's coming, things like that. He tries, but can no longer carry an intelligible conversation. He hallucinates often, mostly kids, people, animals, but is easily redirected when I tell him that, for example, there are no kids playing croquet in the back yard. The problem is me. I know I've seen nothing yet and hate to be a whiner about it, but I'm in a constant state of anxiety. Not to characterize it as anxiety attack level, but constantly on edge. When I'm in the other room, he hollers wondering where I am. When I open the pantry door he asks what I'm doing. Now that I'm typing on the computer, soon he will come in wondering what I'm doing. Most of the time, I have several things in my head that I'm in the process of doing and when he asks all the time, it makes me forget what I've done and what I'm about to do. These aren't the things you can stop and make a list about. For example, heading to the room to put some clothes away and seeing that something needs to go in the pantry first. You do the pantry, he stops you in your tracks, and you forget the clothes. Then when you're back in the room for something else, you see the clothes that you didn't put away and forget why you came back to the bedroom that time. Reminds me of a humerous tale about a gal describing her day saying she took the empty pie tin to the trash and along the way saw a pair of socks that needed to be put away, and along the way yada, yada, and at the end of the day she still hadn't thrown the pie tin away (or something to that effect). I know, it's pretty petty and that's not all that has me on edge as I know you all know. Sheesh. Anyway, aside from anti-anxiety meds, what are some suggestions as to how I can calm myself. This is actually calming, but I can't do this all the time. I don't have an outlet, other than bowling and that's bowling, not relaxing, per se. Ideas on how others handle this frustration would be appreciated. I know the constant interruptions are part of the process and that they will get worse, but how are others handling it to maintain their health and sanity?

God bless,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sun Sep 09, 2012 10:58 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: I'm all flumoxed
Forgive yourself, a lot. The conversations I've had in my head to remain calm and look for the bright side when it seems worst have helped me considerably. At times I have to look back and find the positive in things later. When it's really bad, I've gone to the car in the garage and called my sister, my mom, or my friend. Sometimes I just sit and cry or call them and they just listen to the latest crazy, or frustrating turn of events that has happened (it's not always something Ted has done--it can be the paperwork, doctors, regulations, the a/c going out on a long weekend, the nail in the tire, or a combo all at one time). I'm getting better at telling myself "it's good enough", or that it doesn't matter if the laundry isn't done right now. You get better at NOT trying to control everything. It's actually helped me to have better days, and surprises of some happy things that happen inbetween because my plans were thrown out the window. This past weekend, I had Ted home for a visit. Our dinner of hamburger helper with our youngest daughter was the best--even tho I'd planned on going out, that's what they wanted. I decided to go with it and ended up having such a relaxing, nice time with them. I still haven't cleaned up the spilled food crumbs, but heck, I'll get to it. It's a happy reminder of how much Ted enjoyed his 2 helpings! Take care, each day has its challenges and know that you're doing your best.


Tue Sep 11, 2012 7:11 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: I'm all flumoxed
Thank you so much. In the course of my day, often the tears roll down my cheek and I tell myself I really need to just sit with someone and cry. I do have my sister I can call, but it seems when we're on the phone, I just can't let go. I talk to my son and I'll start to cry, then fight it. I've driven to the store and called my friend out of state and we talk, but I just can't let go. I need my mommy!!! My brother died two years ago and I was able to sob. The tears flowed freely when it first happened, then after that I shed my tears in private. I don't know what it is. Perhaps it's partly due to my mom always telling me to pray on it and that it could be worse...or that someone else has it worse, etc. She's was right, you can always find someone worse off than you. My problems are insignificant. I've thought of seeing a counselor but that just makes me more anxious. I've been the rock in my family, for all my siblings, when we lost mom, then my brother. I was caregiver to both. The tears are rolling down my cheek now writing this and I know I just need a good cry. Stifling the tears just leads to more anxiety. You have shown that others have this need to just talk and cry. The road to "calm" is not lonely after all.

God bless you for sharing,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Tue Sep 11, 2012 9:41 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
Terri, I remember when I went to a dementia support group for the first time in 2008. My husband was in the hospital and then in rehab for a couple of weeks so I was able to get out. The first group meeting, I cried nonstop. That's all I did--I could barely introduce myself. But I wasn't crying for sorrow but because I had finally found people who were going through the same situations I was. It was such a relief! I hadn't found this forum yet and it was my only support at that time.

If you can possibly get away and there is one in your area, find an Alzheimer's support group [there are plenty of Lewy families there, too!]. Even if you only cry and listen, you will feel better.

God bless you!! 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.


Tue Sep 11, 2012 12:46 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: I'm all flumoxed
Thank you Pat. There is one in my area. I told my husband about it and suggested I go first to see if there are patients there. I'm thinking it would be so good for him if there were. He seemed ok, but when the time came for me to go to my first one, he seemed apprehensive about my going. He didn't say as much, just interpreting his behavior gave me the clue. I was also scared to go, knowing I would probably cry the whole time. Make any sense? Maybe one day soon.

Bless you,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Tue Sep 11, 2012 3:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I'm all flumoxed
Support is so very important ! Everyone should seek it some how, some way !

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Irene Selak


Tue Sep 11, 2012 7:12 pm
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Joined: Fri Jun 19, 2009 11:23 am
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Post Re: I'm all flumoxed
Terri
Your situation sounds so much like my very own. I like to think my husband is still high functioning (kind of) except I do not go out alone, ever, except to talk with a neighbor and I can keep my eye on the front door. If I am on the phone, he wants my attention for something. I am afraid if I leave him alone, he will forget where I'm at and go looking for me. One thing I have learned to do was to say no to people. No to baby sitting, no to volunteering, no to bake sales no to any extra that will make my load harder. At first, three years ago when he was diagnosed, I cried all the time. I cried at the loss of our life as it used to be. Its hard on the family too. This morning our oldest boy saw a picture of his Dad and his son, (our grand son) and it almost made him cry. He said "Dad looked so strong". I take my husband every where I go. He still has good opinions and ideas and I still see glimpses of what we used to have but when he gets tired at night, he can't figure out the back from the front of his clothes and I know its not ok but I just help him dress and pretend its "no big deal". I don't know how much longer we have together but I do know that this is "our time". So much of our 55 years of marriage has been doing for others, working, raising kids, baby sitting, Sunday school, PTO, EMS, bake sales, fund raising. I could go on and on as I'm sure many others can also. But our remaining time is "our time" and I plan to make it as happy for both of us as I am capable of. Oh I know I have back sliding every day and feel sorry for myself, but then I have to trust in my Lord.
Thank you for listening
Mary


Wed Sep 12, 2012 12:39 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: I'm all flumoxed
I can so relate. I cry when I walk for my morning exercise. ( I am able to leave him for that and getting groceries but that's all) I cry when he takes his naps. I cry after he has gone to bed in the evening. And I cry when I talk to our sons. But on the brighter side, there are times when I don't cry doing any of those things. I read recently that Lewy Body robs our loved ones of their "essense". That really struck a chord with me. I do cry for his lost essense. Yet, we laugh too. Our son came out on Monday to take my husband's guns out of the house and when my husband was out of the room, my son and I were discussing my husband's condition. The next day he asked if we had been talking about putting him in a home. We weren't. It broke my heart but then I asked him, "Do you think I'm just going to take you to a home and tell you to get out". We both laughed as he gestured with his leg in a kicking motion. I told him if and when that time comes we will have many talks about it. I miss what we had, I miss what we won't have and I so miss "my Mitch"...and now more tears but that's ok because with tears there is a release and my heart doesn't ache quite as much.


Wed Sep 12, 2012 2:05 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: I'm all flumoxed
Hi, Terri. Sorry I haven't been around lately. But I do have some suggestions.

First, recognize that he may not be "early stage" anymore - and then forget about stages. Don't expect him to be the man he was 10 or 20 years ago. He isn't and isn't likely to be again. Enjoy the person he is now. You're likely meeting the young, not complicated by many years of life, boy/man. Talk with him about simple things. Enjoy the boy and find some humor in it. A huge benefit - yes, benefit - I got out of caregiving was learning a bit about who my mom was before growing up interfered.

Consider enrolling him in a senior day program, even if it is just for a few afternoons a week. He needs stimulation, but simple stimulation. It is also very likely that he needs to get out more and socialize on his own, but in a supervised situation. In a senior day program, activities are tailored to the needs of the individual. I also found that advice and observations from the nurse and social workers there were very helpful.

While having Mom at home, I was (and still am) working full time. I didn't realize how hard that was for her, to be in the house all the time, alone or with an aide. And since Mom was extremely good at "showtime," I couldn't get assistance for someone to be there all day, M-F. People say they'll visit, but too often, something gets in the way. (Mom actually got more visitors when she was in the nursing home) Don't take showtime as the indication of how well he is doing. Journal his challenges and accomplishments and share the journal with doctors and other professionals who are involved in his care. If a professional doesn't take your observation seriously, use a cell phone or camcorder to capture the challenge and show it to them.

What I was starting to say was that full-time work made it hard to get to support groups. Even the wonderful Saturday program run by the U of M's Wayne Caron Center wasn't possible because Mom was too advanced for their "early" group and I couldn't get someone to stay with her. So I found my own "support group" in a mental health counselor. He was wonderful. Not only did he understand what I was going through, but he added a "professional" view of how I was doing. That back-up was really important.

Someone on this forum, who is/was in the early stages, described how LBD felt as too many thoughts running through his mind too fast. I asked Mom if that was how it was for her and got a tearful nod. At that point, she couldn't find words anymore. But even those who can talk may not be able to articulate their feelings. I know it meant a lot for Mom to know that someone else had an inkling of what it was like for her. (Bayoucajun, if you're still reading, you made a huge difference for Mom.) There's nothing wrong in asking questions about how this is for your LO. Just keep things simple and easy to follow.

This advice also helped me in the entertainment area. TV programs and movies made recently usually have multiple plots and move very quickly. When I switched to old movies (1960s and before) and old TV shows, she enjoyed them and was seldom bored. Somewhere around the 70s, producers seemed to think that entertainment should be challenging, I think. Simplicity (not to be confused with condescending) is the key. Mom also enjoyed some children's movies and shows, again not "baby stuff" but with one plot and with bright colors.

And try to keep your sense of humor. Sometimes that's all the help you can get.

Best wishes.

Kate

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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]


Tue Sep 18, 2012 12:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: I'm all flumoxed
Terri - you've been given lots of good advice here by others. Definitely getting out and taking care of yourself is in order and getting as much in-home help as you can should help take some of the pressure and frustration from your shoulders. Lynn

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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.


Tue Sep 18, 2012 9:27 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: I'm all flumoxed
Quote:
I read recently that Lewy Body robs our loved ones of their "essense"


susieg,

I think we all need to look at the change in our LO in the way that works best for us. What I consider "essence" is what my mom was born with. The nature that underlies the lessons of experience. Mom never lost this essence. It was the experience that was stripped away to reveal her real essence. What it revealed was a wonderful, kind and sensitive soul with a lively curiosity and a strong sense of humor (which is why I think she married Dad.). Life had administered a number of cruel lessons to her but LBD restricted those lessons and showed me the person she was meant to be - not hugely different from the Mom I knew but without the disappointments and the need to protect herself. Anxiety was still there, but it came from a different place.

LBD affects our LOs in many different ways. It is important for each of us to find the descriptions, references and advice that works best for each of us. But I would guess that what makes Mitch the person is and has always been is still there somewhere. That kick came from him - the person he's always been. Know that the man who loves you is still there, understands your worry and appreciates what you are doing for him.

BTW, great point about asking him a question and getting an answer, even if the words can't come out. We all should remember that, even if it is hard for our LO to talk to us, we should still talk with them as we always have. Maybe slower and maybe without the 5-syllable words, but keep the conversation going. It's important for both of you.

It sounds like you are maintaining a wonderful relationship with Mitch. 'Atta girl!

Kate

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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]


Wed Sep 19, 2012 9:22 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
Kate, I hope that who Derek is now is not his true essence. Certainly his inhibitions have been muted by the disease but I prefer to think that his personality has been warped by Lewy. :cry: .

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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 19, 2012 9:53 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: I'm all flumoxed
Dear Katelu,
Thank you for your words of wisdom. You're right, I am so fortunate that he has maintained his sense of humor... even on the return flight from Hawaii (our son & DIL took us) when paramedics took him from the plane to the hospital, even when hospitalized in April with an infection that almost did him in, even when he can't button his shirt or pull the covers over himself in bed without my help. No marriage is perfect and we've had some tough times but I am so thankful that I stuck around for these 36 years together. I am not thankful for this disease but I am thankful we are going through it together. I will be thinking about your words today and looking more closely at his essense, my essense and the essense of our marriage.
Susieg


Wed Sep 19, 2012 10:07 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: I'm all flumoxed
You are all so kind in your responses, and helpful. I've picked up some wonderful suggestions here, some I hadn't thought of and some I've already tried. To be able to reach out and find others who can empathize and offer support makes the road much less lonely. Thank you all.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Sep 22, 2012 10:05 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: I'm all flumoxed
Kate
You gave someone the advice of "Don't expect him to be the man he was 10 or 20 years ago" You went on and said "enjoy the person he is now". This is something that I have thought of many, many times. Even though I hate this ugly disease, I feel fortunate to see him as a young man and as you say "uncomplicated by life". He is so sweet and gentle but many days reminds me of a pre schooler. Good thing I always loved the pre school age. I think one of the most important things that has happened is my attitude adjustment. I needed to get past the grief stage before I could accept this child like man for who he is now.
I am still having problems coping with insensitive remarks from others. Some have made comments to me such as "he'll out live you because you give in to him all the time". Or "this is so unfair to you". What do they expect me to do? This is my husband. I can never think of anything to say back to these insensitive remarks. When we are together, we laugh, dance, take walks, shop together, gardening, even talk politics. (good year for that) These insensitive people don't see that part of my life.
Mary

I tell my Lord, "I'll do this as long as you want me to".


Sat Sep 22, 2012 8:58 pm
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