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 Another new caregiver. 
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Joined: Thu Apr 29, 2010 3:09 pm
Posts: 5
Location: Utah
Post Another new caregiver.
Hello there, my name is Tanya and in about 8 months, I have become my 54 year old fathers caregiver, at the age of 24 (and I'm sure to him I have become the devil...ha ha).

As I said, it started about 8 months ago and my dad called me saying that he was going into the doc to get his Diabetes numbers checked, routine he said. He was diagnosed with diabetes in 2007 after falling in his hallway and losing consciousness. Turns out that during this visit, they found a hernia and he began seeing me and more docs more often.

I started wondering what was going on with him when he would call me two to three times a day, repeating what he had asked or told me during the previous call. Then a friend of his from work called and said that he had been "covering" for dad whenever there was new equipment he was supposed to learn because dad just didn't get it and couldn't catch on. I also got a call from the diabetes doc who said he was also noticing memory loss and repetitiveness.

That doc started the beginning of the snowball and then finally an answer. After 3 neurologists, a neuropsychologist, and several others we were told that he had LBD and possibly a traumatic brain injury from the three falls that occurred in the past three years.

Dad had been in a relationship for about 3 years and the past year became long-distance after she said she no longer wanted to live in Utah and she wished to move to North Carolina, closer to family. While my visits became more frequent, she began to distance herself until about four months ago when she told him she had found someone else.

Since diagnosis, about three weeks ago, dad has been told he can no longer work or drive or handle any of his finances. (Guess who gets to tell him all of this and then take his car away?) He has also been told that although he is taking two separate meds (Namenda and Aricept) they may not help.

The most heart breaking conversation thus far was yesterday when he asked me "why can't I remember anything? Why cant I remember anyone's name? I know what I want to say, I just can't remember it." I explained the best I could, so he could understand some, and he then asked me "So, am I ever going to get better? Will it ever be fixed?" "No, dad. It won't get fixed. But it will slow down as long as you take your meds." "So, how long until I die?".

I am now managing my dads finances, while he brings in about $200 less than what his rent is until (SSI kicks in). I wait for his next impulse decision on something to get involved in (make money quick schemes, a 12 month lease on an apt he can't afford, or singles web-sites because he is terrified he is going to die alone).

My awesome husband has been so good during everything, but I know it is wearing on him when I get so overwhelmed and there are NO support groups for LBD, specifically, in Utah. So, I am here, leaning on you all for support. I definitely need it.

Thank you for letting me have a place to vent.
Tanya


Sat May 01, 2010 2:50 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post You are a wonderful daugher
Tonya, You are going in the right direction and you have your sense of humor which will help you over the rough times ahead. I am so sorry you need to be here but other young people on this forum will help see you through. Bring your worries here you do not have to go it alone.

DrP


Sat May 01, 2010 4:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post 
Hi Tanya - I am so sorry that at your young ages you and your dad are going through this. I'm glad you have a supportive husband and that will help. I'm also glad you found this forum - it is incredibly helpful to find friends and info. here, and you will get lots of support from people who know just what you are dealing with.
I had to take away the car keys, the checkbook and talk my dad into moving into an ALF about 10 mo. ago myself. Many others here have had to do the same with their LOs. It is very difficult, but you will get through it. You sound like a strong person, but make sure you keep yourself healthy through this ordeal.
Personally, I don't mention "the D word" to my dad - he gets too freaked out, so when he asks me I tell him there are things not working right in his brain and I'm going to do everything I can to work with the drs. to help him. He hasn't asked me about when he's going to die and things like that (thank goodness). He is WAY older than your dad - 88, but we started this journey last year.
Stay in touch via the forum and the LBD chat whenever you need a friend or info. Lynn


Sat May 01, 2010 4:54 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post 
Tanya, Welcome, none of us joined this club by choice. Your Dad is so young and you and your husband have barely started your life together. You will need all the support you can get, this is one place you can always count on. My husband just turned 70 and was dx about 6 yrs ago. You'll find your dad's condition will fluxuate, sometimes daily or even by the hour. Be ready to ajust to many "new normals". Again, ask and read, you'll learn lots.
Take care of yourself,
Gerry


Sat May 01, 2010 7:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
Welcome to the forum! Sorry you need it, but glad you can be here to gain knowledge and support.

It sounds like a good time to get power of attorney papers signed before he gets worse. You should get both financial durable POA and durable health care POA while your father still is able to know what he is signing. It might save you from having to get conservatorship later, which is a lengthy and expensive procedure.

I admire your courage in taking on this huge and difficult responsibility. God bless you!
----------------------------------------
Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 4. I am his caregiver at home.
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Sat May 01, 2010 8:07 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Tanya,
Welcoem to the LBDA forums, I too am sorry for your need to seek out such a group, you guys are so young as is your Dad.Visit us often and I think you will get the support you are looking for here.

_________________
Irene Selak


Sat May 01, 2010 8:24 pm
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Joined: Thu Apr 29, 2010 3:09 pm
Posts: 5
Location: Utah
Post 
Thank you all for your warm welcomes.

I have already obtained both POA's. We did this months ago, just in case we needed it.

Humor is one of the only ways I have been able to keep whats left of my sanity. However, it is very hard to know if my dad will remember our conversation as a funny or serious one. So, I just have to make sure that I always treat the same conversation in the same context. It is pretty hard though.

I was wondering what other symptoms he may show. I have read all the articles I can find and the more I read, the more I realize he has been having symptoms for years. Along with the obvious confusion and memory loss, he has been having falls, having trouble forming sentences, he becomes paranoid, he "twitches" in his sleep and has had sleep apnea in the past. Doc says that his face is "flat". He has always been a pretty short tempered guy, but has become the most passive person I know. He also cries a lot, which he has also not done a lot in my life.

What else should I expect?


Sat May 01, 2010 10:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
Other symptoms he may display include illusions, delusions, hallucinations, visuo-spatial deficit, Capgras Syndrome [believing that a loved one is actually an imposter], agitation and paranoia. He may also show increasing muscle stiffness, loss of balance, weakening of voice and difficulty swallowing. Urinary retention and/or incontinence and fecal incontinence are also common. Loss of executive function makes him/her unable to plan or carry out tasks and he/she will eventually need assistance with all activities of daily living. I wish there was some good news to balance out the bad. :(

----------------------------------------
Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 4. I am his caregiver at home.
----------------------------------------


Sat May 01, 2010 11:48 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post symptoms
I can think of three that may be puzzling to you, not necessarily appearing but quite common. You talk about "flat face". I think you might find more about that if you do a search for "mask like expression". Perhaps "show time" will happen in which he becomes as he used to be when occasional friends or family members drop by or maybe in the dr's office he will do a great testing visit. [You come away doubting his daily existence.] Believe me it is not an act, just try to enjoy the few good moments. You will not be able to explain how he can draw up a good performance--- he just possibly can. Another is "capgras syndrome". You will not like this one and I hope he will not experience it. You can search for these and perhaps others may know more.

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.


Sun May 02, 2010 12:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post 
Tanya - some of the personality changes you have already seen could change again, so don't be surprised if that happens. The one thing that seems to be common is that change can occur rapidly with these diseases, and that can be everything from mobility to personality to hearing, etc.
He may get very depressed about his health, and then that can turn into anger, frustration and aggitation. And he can direct that at the ones closest to him - that is really hard to deal with. Try not to take it personally - I keep having to remind myself and others that "this is the disease, not my dad." Sometimes that's difficult to do.
I wish I had had more info. about all this when I started dealing with it last year. I can handle these things a lot better when I am informed!
Lynn


Sun May 02, 2010 2:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Tanya,

Is your father in NC or UT? Of the 3 neurologists and neuropsychologist he saw do you recommend any of them? If your father lives in UT, which neurologist is he seeing now?

I was on the LBDA Science Committee for several years, and overlapped with a gentleman who does research at the Univ of UT -- Jim Levy. I think he's a neuropsychologist that works in the U's Alzheimer's Center. He's very knowledgeable about LBD.

The Alzheimer's Association in UT is very active. I attended several support group meetings for dementia caregivers in SLC and Bountiful,and thought they were well-run with professional facilitators. You might look in to.

Robin


Mon May 03, 2010 1:03 pm
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Joined: Thu Apr 29, 2010 3:09 pm
Posts: 5
Location: Utah
Post 
Robin,

We are both in UT...Tooele.

We have seen 3 Neuro's and dad didn't care for one of them (personality conflicts) but I thought he was okay. Dr. Sadiq at the Tanner Clinic in Layton. Another Neuro totally discounted any Dementia and said he thought it was cronic fatigue. We didn't go back to him. The new Neuro that we have started is Fleisher at McKay Dee. He seems good but referred us to Dr. Corgiat in Ogden who is a clinical phycologist. He gave the LBD DX. He was very straight forward and explained everything to me very well. He is also trying to start a therapy group for AD and LBD in conjunction with the U but unfortunately, dads insurance doesnt cover the U. I wish it did.

If you have any other resources, please let me know. There is nothing local for me or dad and I would really like more education and support.

Thanks'
Tanya


Sun Jul 04, 2010 8:54 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Tanya,

In addition to the resources already mentioned in UT, I'd also recommend the APDA Information & Referral Center (coordinator Sylinda is very helpful; see utahapda.org). Though it's based at the U, the center can assist people anywhere in UT.

Too bad your father can't see someone at the U. I think some of the best neurologists are there.

I would definitely find an MD to provide the diagnosis! (No offense to the clinical psychologist.) I suggest you contact Sylinda and ask about any non-U-based neuros who know LBD.

Robin


Sun Jul 04, 2010 10:27 am
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post 
Hi Tanya,

I was so sorry to read your story, especially since you and your father are both so young. Are you the only child? Are there siblings who can help share the burden of what you're going through. I'm so glad to know you have a supportive husband and a sense of humor to keep you going. My dad is 91 and recently diagnosed, although I think he's had the disease for several years. He was very big on "show time," but can no longer do it. He's currently in a nursing home and deteriorating rapidly.

It sounds as if your dad is short on funds, making the choices even harder. Depending on the state, I hear, some assisted living places will take those on Medicare. Please others correct me if I'm wrong about that.

The real tragedy is that both of you are too young to have to deal with this.

My heart goes out to you.

Amanda


Sun Jul 04, 2010 4:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
Medicaid, not Medicare. :)

_________________
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 Jul 04, 2010 5:23 pm
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