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 Another big decline 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Another big decline
Yes, I wish I'd gotten really mad at my sister a while ago. She actually is available by phone now most of the time - that alone is a big change for her and makes my life a lot easier when the ALF or hospice call me and I need to contact her.
I have actually had a mini-vacation this week at my dad's house and don't feel anywhere near as stressed as I usually do here. I visited him less often than usual, the basement job is finished, and I've been spending lots of time with old friends from high school, some of whom I haven't seen in years. It's been a great trip down memory lane all weekend with lots of my best friends from HS, including one whose mom is in even worse shape than my dad. Now it's Mon. morning and I have to get on the phone to hospice and make several other calls about my dad, so I'm glad I had such a fun and restful weekend. Back to work! 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.


Mon Aug 09, 2010 7:43 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Another big decline
Glad you trip has been more peaceful this time around, I guess your sister is trying to step up a bit, thats good!

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Irene Selak


Mon Aug 09, 2010 3:50 pm
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: Another big decline
Lynn - Concerning how a LO stops knowing dear relatives, let me share how, in the past month, I realized that Dad has intermittently stopped knowing who I am. He lives in a locked memory care unit five blocks from my home and I see him every day for 2-3 hours. We go out to eat, run around town in the car, and spend time together at his apartment as well as in common areas socializing with the independent living residents. He is gregarious and conversational with everyone he meets.

Initially, Dad started talking to me about me, "Sue and I go to a library somewhere around here." "Sue's car, Sue's house." I thought it was a language problem, maybe pronoun troubles, because he otherwise behaved with me as he always has and seemed oriented to our usual daily routine. He would also ask after my son by name in an appropriate way. In hindsight, I understand that there were moments during our daily three hour visit that he looked at me and knew me and others when he took me for just someone who was being helpful and good company. Sometimes the not knowing happened right in the middle of a visit. The difference was imperceptible, except for his language.

About two weeks ago, he got very angry at my mother (deceased 5 years) talking about how "Dee" never comes around any more, how she's asking for a divorce and has an apartment in another town. I took that to be a delusion shaped perhaps by past marital troubles of theirs. Some weeks later, I was complaining about having wasted too much of my own time on (my own) bad marriage, and he got very hurt and said "Thanks a lot." I said "Oh no, Dad! I'm talking about the man I married (now an ex!), MY husband" He said "Well, what do you think I am?" I had to tell him "Dad, you and I aren't married. I'm your daughter." So for some period of time, he had been thinking I was his wife, (although I bear no physical resemblance at all to Mom). To complete the circuit, he has since been angry directly at me for "neglecting him" and suggested that we get a divorce. In hindsight, the angry talk about Mom was actually a complaint that I wasn't accompanying him more, as a wife should, in daily life.

Since then, in helping him dress or putting him to bed, (activities I don't usually handle), he has three times clearly thought I was a paid caregiver, asking about how I liked working at the ALF, how many other clients I have. All this weaves in and out with moments in which he clearly seems oriented to who I am and to our daily living habits, as well as the existence of my son here in Texas and grandkids and other relatives out of state. It's just beguiling.


Tue Aug 10, 2010 5:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
I've been his daughter, his niece [he doesn't have a niece], my sister, my mother, his son :shock: and a paid caregiver. I haven't been his wife in months. I'm mostly the paid caregiver now. The other morning, trying to get him out of bed, I burst into tears with frustration. He said, "Stop that noise this instant! You're supposed to be a professional nurse!" I blubbered, "I can't do this any more." He said, "You'll have to talk to your supervisor." :x I thought to myself, "Yeah, I'll hand in my resignation!".

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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.


Tue Aug 10, 2010 5:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Another big decline
So far, my dad knows me, but how long will that last? He was just awful the whole time I was there this morning, very nasty, shaking his fists the entire time. When the hospice nurse and hospice PT came in and were doing some mental and physical assessments he got really mad and said "that's enough of the ******* interrogation by the FBI."
He couldn't remember his oldest grandson's name or where he lived. It was just an awful morning and I left thinking it was a good thing that I don't like martinis or I'd have one of those famous 3-martini lunches! 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.


Tue Aug 10, 2010 10:39 pm
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Joined: Fri Aug 13, 2010 11:52 am
Posts: 2
Post Re: Another big decline
Hi Lynn! It is flowers2u otherwise known as Shar. I am finally back and have been checking in with you and mockturtle from time to time. I am sorry to hear of your father's decline. I think of you and mockturtle often. My mother has been gone for over a year now and I am still mourning. I am glad you are taking care of yourself. It is a process that you will get through. Hang in there. Flowers2u


Fri Aug 13, 2010 11:59 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
Shar, nice to hear from you. [I'm Pat, incidentally--there's a faint signature at the bottom of my posts]. Something I'd like you to share with me, if you would: Are there things you wish you had done/not done while your mother was still alive? I'm always afraid I might be missing opportunities that I will later regret. Thanks!

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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.


Fri Aug 13, 2010 12:08 pm
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Joined: Fri Aug 13, 2010 11:52 am
Posts: 2
Post Re: Another big decline
Hi Pat,
It feels good to know you missed me! I tried to get back on quite a while ago but I guess it was not the right time. I will think about your question and get back to you.

I have not had many reqrets. I do wish I had brought Mom home earlier than I did. She was in assited living for 2 and half years tooooo long. I should have spoken up more when things went wrong there. I still think of writing them a letter. You have to pick your battles you know.

When Mom was passing I left her room for a few minutes, thinking we had a couple of days. I didnt give her the medicine that helps the gurgle. I thought I could take it.... it was hard so I went up stairs for a break. She passed while I was gone. That is my only regret I think. I had told her I loved her as I left the room so??? I will think more on this and get back to you.

How are you? I think of you regularly. Sharon otherwise known as Shar and Flowers2you.


Fri Aug 13, 2010 12:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
Shar, she was probably hanging on just for you and let go while you were out of the room. Same thing happened with my father who passed just as I had finally got to sleep after several days of 24 hr. care. I was so distraught thinking I didn't get to say my final 'goodbye'. He had cancer, not dementia.

_________________
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.


Fri Aug 13, 2010 12:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Another big decline
I've had several friends whose spouses died just after the other one left the room, after having been bedside for hours on end, day after day. One good friend said she thinks he needed for her not to be there because it would have been harder on her.
The hospice nurse seems to be doing what my sister and I have been requesting for months - having my dad taken off of certain meds and having other ones changed or the dosage changed. I'm not sure how or why a neuro, psychiatrist, and CNP, all in 3 different practices, can ignore face to face and written requests from POAs. I have sent the same letters of request to all 3 offices, and met face to face with the psych. and CNP, all to no avail. They do seem to be listening to the hospice nurse, so far. Has anyone else had this happen? Also, we requested that the CNP be changed back to the one he's had for a year, and asked that they contact us before meeting with my dad. While I was there Tues. the CNP who argues with my sister and me about our requests showed up, unannounced, and she is the one we requested be taken off my dad's case. It's as though my dad didn't appoint me or my sister as POA and we have absolutely no say in anything having to do with his care. We will be writing another letter to the CNP office and this time sending a copy to the nursing board in that state. This has gone on long enough. I really don't need a battle on my hands, but we can't get any of the drs. offices to listen.

_________________
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 Aug 13, 2010 5:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
That's a real bummer, Lynn! I thought you had that problem all taken care of!

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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.


Fri Aug 13, 2010 5:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Another big decline
Thought we had it taken care of too. Unfortunately my inside contact at the ALF who used to call me and update me on everything quit a couple of weeks ago. The CNPs and drs. do not respond to any communications from the families, so we are in the dark. I check in with the nursing staff at the ALF when I am there, but I can't be there every week for obvious reasons. My sister is not great about taking charge and getting weekly updates, but I am just going to have to impress upon her that this needs to be done and I can't always be the one trying to do it by phone or be in MD all the time. Hopefully she'll step up and get the info. we need.

_________________
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 Aug 13, 2010 8:59 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Another big decline
Lynn, I am so sorry to hear that you are still having problems withthe CNP. It has been my experience that some in the medical progession (certainly not you, Pat) simply cannot allow anyone without some sort of medical degree behind their name to have input into the care of those we are with ALL the time and whose behaviors we observe and note and deal with. My primary care physician...a really nice guy...is like that. I have learned not to tell him what I think because then he must find something else. Often, two or three visits later we are back to my thought...but by that time it's his thought.

We are lucky in that my husbands doctor is not at all like that. But I know that many are. I hope you can prevail. Have you gone to the Director of Nursing at your facility, or the Administrator. I have found it helpful in the past to go to someone in authority and tell them the issue and then ask them for help in dealing with the situation.

If you can get that person thinking of ways to change how the CNP works with your LO, you have effectively co-opted that person in power. And it never hurts to have someone thinking your way.

On the other hand, some things just are too tough. In the final analysis, you may need to move your LO.

Good luck to you. Nan...married to Del who got his diagnosis of PDD, a Lewy Body Dementia, just today at the VA. It's a terrible diagnosis, but no surprise. I knew it was coming. At least now we are going to start to address the cognitive issues.


Fri Aug 13, 2010 9:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
Nan, you are so right! We caregivers are really the 'experts'. As a working RN I had never heard of LBD, nor have most doctors.

_________________
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.


Fri Aug 13, 2010 9:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Another big decline
The ALF where my dad is has had almost 100% turnover in the admin. staff in the year he's been there. The dir. of nursing just quit and the only nurse I know who is left is like a carbon copy of the CNP. The other nurse who was great, just quit. The CEO or whatever her title is, is great, but she just got back from maternity leave after just beginning this job. So, it's kind of turmoil there for a little while. As soon as she gets new people hired we'll go through the process all over again with the new nurse and head of nursing. I'm just keeping my fingers crossed that the hospice nurse has the ability to get these med. professionals to work with her and each other. Thanks for your support everyone. 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 Aug 14, 2010 2:19 pm
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