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 Homesick again? 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Homesick again?
Yes, Jeanne, it is very painful. I keep telling myself that it will be easier when her cognitive abilities have slipped to the point where she is not aware, instead of struggling the way she is now, but maybe that's not even true. I need to work on abandoning all expectations and just be there.

Julianne


Thu Mar 03, 2011 9:08 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Homesick again?
I know I posted this before, but it was quite a while ago before some of you were members of this LBD forum family.
When my dad was first diagnosed with possible LBD/PDD and I was so depressed about it and working so hard to help him, I went to a counselor at the local memory center. She said "the good news is that once his congnition declines to the point where he really doesn't know how bad off he is it will be better for him and you." She was right, only what I didn't know at the time was that the psychiatrist I took my dad to was going to put him on Namenda and Aricept, without talking with me about all the ramifications of that. He prescribed those meds, my dad came out of his "lala state" where he was relatively content, and became more cognizant of how bad off he was. This increased his aggitation and depression (and mine as well). Then I began what was to become a battle to take him off the meds. The CNP, psychiatrist and neuro thought it was great that his speech was better, executive functions better, but his overall physical decline was much worse and so was his emotional state.
After months of discussing, pleading and then insisting that he be taken off the meds, I was threatened with a lawsuit for doing so.
So folks, please, be very cautious about the med. care your LO is gettting. Unless it's someone you've known and trusted for a long time, be in constant contact and insist (with a letter from your LO's lawyer if need be) that they are NOT prescribed any med changes unless they discuss all the ins and outs with you FIRST.
My dad was taken off one of those a couple of weeks before he died and one a few days before he died. Without taking his drs. and CNP to court, there was NOTHING that I or the director of the ALF could do. These people acted like they were gods and would not engage family members as part of the care team, AT ALL. It was an unnecessary stressor in an already stressful situation. All the best, 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 03, 2011 12:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Homesick again?
And, Lynn, the amazing part was that your dad was on Hospice!

_________________
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 03, 2011 12:20 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Homesick again?
Thank you for your observations, Lynn. My mother is on both of those meds and I really wonder sometimes whether they are for the best.

Julianne


Thu Mar 03, 2011 3:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Homesick again?
AnnieN said something about this time last year that made so much sense to me. It was something like "it's a matter of balancing cognitive abilities with their emotional state" when it comes to deciding about meds. So true, and that is what I kept trying to do.
Even though my dad was on hospice his last months, and the hospice nurse got the hospice director, a palliative care DOCTOR, to say he should be taken off these meds, somehow the psychiatrist was able to override the hospice director. I don't know what the rules, protocols, or whatever are on the Eastern Shore of MD, but when I've explained this situation to various doctors where I live in Vermont and some at Dartmouth's memory center, they just couldn't believe it. Neither could we!
That's when I fired the psychiatrist, and the CNP got mad at me for doing so and SHE was able to override the hospice director, and me, the POA, and put him back on these drugs. It was a freaking nightmare! My poor dad, he's the one who suffered most from these egotistical b........s doing whatever they wanted no matter how badly it affected the patient. I hope you all are not having this experience. 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.


Sat Mar 05, 2011 7:09 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Homesick again?
Lynn, that really is incredible. I am glad you are past all of that.

Today, my mother is upset because yesterday someone at the NH (innocently) told her something my mother did that she didn't remember. This brought about a conversation about what her dementia is doing to her. And she says she hates the NH and wants to go somewhere that she can "be herself." None of that makes much sense literally and I think maybe she is expressing a desire to be her pre-LBD self.

She is also concerned about what other "mistakes" she has made in the past or will make in the future due to her memory and cognitive losses. All I could tell her was she hasn't made any mistakes that matter and if she does make other mistakes, the NH staff and everyone else will understand that it is due to her disease and she can't help it. She said she was up all night last night, worrying about this stuff. I just hate watching her struggle against it.

Julianne


Sat Mar 05, 2011 8:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Homesick again?
It is really hard on us family members, huh? I just hated seeing my dad's decline and his often knowing how bad he was after those meds were started. It was immoral, what they did. It really took its toll on me, too. 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 05, 2011 8:11 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Homesick again?
Yes, Lynn, it is awful. Your dad's situation was just appalling. My mother is currently in a slight upswing in terms of her cognition and it just makes everything so much worse. It is hard on her and the whole family.

Julianne


Sat Mar 05, 2011 9:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Homesick again?
I hear ya! It is just heart wrenching when they know how bad off they are. Sometimes my dad would ask me why he was like this and then he'd start crying uncontrollably. It was like my heart was ripped out of my body. I'd go out to my car many days and cry for a while before trying to drive the 40 mi. back to his house. Sometimes I'd have to pull over on the side of the road because I'd start crying again. I had to start building fun things into those evenings back in my home town to keep from losing it myself. Many of my HS friends were there and we hung out a lot in the evenings. They really helped me keep my sanity. As my dad always said "you can never have too many friends." So right he was.

_________________
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 05, 2011 11:39 pm
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Joined: Wed Feb 16, 2011 12:23 am
Posts: 4
Post Re: Homesick again?
My stepmom went into an ALF in mid-January. She said she knew she needed to be there even though she didn't want to be. Now that she has seemed to progress in her disease, she's obsessed with leaving and she keeps packing up her stuff up on her walker to leave. She calls me and says she's ready to go, where am I? It seems she can't remember moving there now and thinks she's at a hotel. No matter how much I remind her, it doesn't stick. I'm about to be convinced that it won't. I did post a sign in her apt reminding her. But I don't think she'll read it. I worry that she can't be entertained at all which makes her obsess more about moving. She seems to be having more difficulty working things, like the tv remote and phone. I was talking to her on the phone trying to help her change her channels and she was pushing the buttons on the phone. She won't participate in any activities. It is very sad and heartbreaking to watch her misery. Before she moved there, her favorite TV channels kept her company. Crying about being mixed up and not able to remember anything is heartbreaking. I'm so sorry everyone is going through all of these things. I am very appreciative for this site.


Sun Mar 06, 2011 12:49 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Homesick again?
LTCVT wrote:
I hear ya! It is just heart wrenching when they know how bad off they are. Sometimes my dad would ask me why he was like this and then he'd start crying uncontrollably. It was like my heart was ripped out of my body.
Dale is going to be under hospice care beginning next week and I'm not sure how much he understands but he started sobbing last night so I held him until he went to sleep. I tried to hear what he was saying but could never quite make it out.

Just a couple of weeks ago, the neurologist refused to give us the medication for sleep (Clonazepam) and suggested the Exelon Patch instead. Dale is completely delusional and having hallucinations so this made no sense. I asked the Palliative Care nurse to talk with Dale's PCP and we got the medication for sleep. At least, his final days will be somewhat peaceful.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 06, 2011 6:05 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Homesick again?
Minabird, it is amazing how much your stepmother sounds like my mother, right down to mixing up the TV remote and the phone. I am so sorry she and you are going through it, too.

It took me a while but I am finally learning that it doesn't work to have a rational discussion with your LO in this condition. Their minds aren't working rationally anymore and even if they were, the LOs will not remember what you tell them. It works better to redirect them.

Hang in there!

Julianne


Sun Mar 06, 2011 10:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Homesick again?
I remember telling my dad when he was like that "I know you don't want to be here and I don't want you to have to be here but we don't have any choice. You are ill and need a lot of people to take care of you. I'm sorry you are sick." That helped temporarily sometimes. There really are no "magic bullets" to help them so you just do the best you can and try to keep going without losing your own patience and sanity.
Been there, done that too, with cell phones, land lines, tv remotes. When my dad could no longer use the remote we KNEW things were terrible!
Big hug for all you CGs out there, 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.


Sun Mar 06, 2011 12:55 pm
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