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 Dad's rapid decline! 
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Dad's rapid decline!
Hello everyone,

It's been a long time since I last wrote, and it's been a very difficult time for us. My Dad (who lives in a long term care nursing home) has gone progressively from bad to worse. In a nut shell, he cannot walk even with assistance. As soon as they get him off the chair, his knees buckle or he faints. His movements are totally out of control. When sitting in his chair his arms, his neck, legs and torso are in constant motion. It's really awful to watch him sway his whole body all day long. To partially alleviate this problem the neurologist suggested titrating down his sinemet. This helped a little but not very much.

Then, recently his mouth is clamped shut. Most of the time he cannot open it, which makes it very hard for him to cough or breath when his sinus is congested (he also has a deviated nasal septum). Obviously feeding him has become quite an ordeal. He is hungry and will gladly eat or drink, but most of the time his mouth has to be opened by the person who feeds him (we gently stick a gloved pinky or teaspoon between his lips and then the mouth snaps open). He has lost about 15 pounds in the last 2 months. He only weighs 145 pounds when his usual weight is supposed to be 170 pounds. His muscles are all gone. We don't know whether this weight loss is due to the general shutting down of the body, or whether it's due to the fact that because of the difficulties in feeding him the staff just give up after a few mouthfuls. My sister tries to go and feed him every chance she gets on her days off, but the rest of time... We are not sure we can trust that the staff in the nursing home actually take the time to feed him. We cannot find private help because no one wants this responsiblity of prying his mouth open combined with frequent choking and the need to aspirate his throat frequently.

He cannot talk any more, not even single words, therefore we have no idea how he feels or whether he is aware or not. He seems to recognize his loved ones and demonstrates affection through hand holding, trying to smile, etc. But most the time he is unresponsive.
His fingers and toes are totally curled in now. The OT has ordered some kind of brace to prevent his finger nails from penetrating into the palms of his hands.
But we don't know if he is in pain because we cannot get any verbal response out of him.
I think a feeding tube is out of the question because of the need for anaesthesia (am I right?)

I am just wondering if this is the final stage? What can we expect from now on? What can we do to lessen his suffering and make him more comfortable?
He is still on Exelon and Sinemet. Do we need to put in other meds, or reduce these ones?

I am going back home to Toronto (I live in Italy most of the year) during my Xmas holidays. I go home 3 or 4 times a year and try to stay as long as I can to help my sister with our Dad's care. My sister is all alone with no one else to help her. We have an appointment to meet with his neurologist as soon as I get there. Is it time for palliative care?

It is heart breaking to see him in this condition and getting worse everyday. He has no other health condition (not even high blood pressure or cholestrol). Just this awful LBD! What can we do to make his remaining days more comfortable?

SS


Thu Nov 11, 2010 6:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Shomi,

This does sound like the final stage. How many hours a day is he sleeping?

Does your father have access to hospice in Canada? Were he in the US, he'd qualify for hospice.

What were your father's wishes with regard to a feeding tube? It's not so much the anesthesia that's the issue. It's his very frail state.

Can you go earlier to Canada?

Robin


Thu Nov 11, 2010 11:58 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad's rapid decline!
Shomi,

I am so sorry for the decline that seems to be effecting your Dad and I do for sure believe Pallitive care is in order.
I wish you could get there sooner and realize that can be hard to do but it does seem as if your Dad's journey is coming to an end!

I wish you and the family well!

_________________
Irene Selak


Thu Nov 11, 2010 12:05 pm
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Thank you Robin and Irene for your replies.

Dad is not sleeping much during the day. Apparently he does sleep at night but during the day he is put on his Broda chair. He stays awake and as I said earlier, he is in constant motion. The movements are not tremors, they are continuous swaying movements of either the torso, the arms or the legs. In fact his Broda chair is completely padded because with his previous chair the movements of his limbs would cause them to be injured everyday as they would bang against the exposed metal components of the wheel chair.

Last week, he developed a fever for a day and was given tylenol and the fever was gone. Yesterday, we were told that he has a very light upper respiratory tract infection and his family doctor prescribed an antibiotic and much to shock and horror a cough syrup containing Dextromethorphan which has a potentially dangerous interaction with the citalopram (an SSRI) which is a part of my Dad's daily meds. So I made a phone call to the SNF followed by a detailed email, asking them to stop the cough syrup immedaitely. I also left emails for the family doctor drawing to his attention (again) the dangers of prescribing medication to Lewy Body patients without checking interactions and drug sensitivities.

It seemed that I managed this action just in time and they withdrew the cough syrup an hour before the administration of the first dose!

But apart from this, for now, he doesn't seem to have much of an infection and my sister says that he hardly has a cough and there is no fever.

My ticket for Toronto is booked for December 20th, but of course if something critical happens I will leave immediately.

There is hospice in Canada and they usually call it palliative care. We asked the neurologist way back in August to send us palliative care and we re-asked again about 3 weeks ago, but nothing has happened yet. It's funny but thru reading this LBDA forum I have become more familiar with the US system than with the Canadian system. I have no idea how hospice works in Canada and it is difficult to delve into these issues all the way from Italy. When I get back to Toronto, I will look into it immediately. Let's just hope and pray that we will not have another crisis or another severe decline during the next 4 weeks!

Feeding tube: we have no instructions from our Dad and no living will. So we have to make that decision. We feel that as long as he wants to eat and is hungry, we have to find a way to feed him, even thru a feeding tube. But can a feeding tube be "installed" without total anesthesia? What are the drawbacks and risks? One risk that I can think of is that due to his constant fidgeting, he will probably pull it out all the time. Is there a way that it can be covered so he can't get to it?

Sorry for all the questions. But please, keep sending me your words of wisdon and comfort. They mean all the world to me.

Thanks again.
Shomy.


Fri Nov 12, 2010 4:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's rapid decline!
His symptoms sound a little like some EPS [extrapyramidal symptoms] that result from long term use of heavy psychotropic drugs which resulted in involuntary, writhing motions. When thorazine was used for psychosis these symptoms were quite common and when I worked in psych I would sometimes see this in patients who had been on the older meds and who couldn't sit still. PD meds can cause this, too. My husband used to make squirming motions, especially with his mouth, when he was taking higher amounts of Stalevo [carbidopa/levodopa/entacapone] but these symptoms resolved when his dosage was reduced. It doesn't sounds as if your father's problems are drug related but it might be worth investigating whether or not he was given any psychotropic [neuroleptic] drugs in the recent past. My heart goes out to you and I know it must be agony to not be able to be with your dad right now. God bless!

_________________
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 Nov 12, 2010 10:08 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Shomy,

Well, if he's not sleeping much, then I would say your father is not in the final stages.

The swaying motion sounds like dyskinesia due to long-term use of dopaminergic medication, such as Sinemet.

I've never heard of an interaction problem between DM and citalopram. Is this documented on rxlist.com or drugs.com? I'd like to look into it and make the local support group aware of this.

Not sure what you mean by "total anesthesia." A feeding tube can be placed with something like Versed. Inhaled anesthesia doesn't need to be used.

I encourage you to read the booklet "Hard Choices for Loving People." It's section on feeding tubes focuses on feeding tubes for dementia patients. The risk of their pulling out the tube is one reason why the authors of this booklet aren't fans of feeding tubes in dementia patients.

Robin


Fri Nov 12, 2010 10:28 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Hello everyone,

Thanks again for writing back.
Unfortunately I have to get back to a meeting and can't explain in detail.
But quickly, in response to Robin's question about interaction between dextromethorphan and SSRI's, please refer to the following two links. There are many more, but right now because I'm short on time, I can send you these two:

http://tga.gov.au/npmeds/pi-dextromethorphan.rtf

http://www.medsafe.govt.nz/profs/PUArti ... -May09.htm

There are many many more different articles, all pointing out to the same danger.

Regarding antipsychotics, we have always made sure that Dad never received any. He has never had even seroquel. In the very beginning of his illness (about 4 years ago) he was given Olanzapine for about a week but we stopped that right away too as soon as we found out. That was the only time and it didn't cause any long-lasting symptoms (only slight drooling for a few weeks, which also stopped eventually).

I wish I could explain more, but I really have to run. But I will write more next week. Meanwhile, please keep your replies coming. They are much appreciated.

Shomy.


Fri Nov 12, 2010 12:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Thanks for the links on the interaction problems between DM and SSRIs. I will run the info by my friendly DPharm.


Fri Nov 12, 2010 1:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Dad's rapid decline!
If it's not EPS it must be that Lewy has attacked a certain part of the brain that causes these dyskinesic movements. Gosh, I surely hope something can be done! That must be awful for him and for you who love him, seeing him so uncomfortable. God bless!

_________________
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 Nov 12, 2010 1:28 pm
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Hi everyone,
New symptom: this is the third time in the last 3 months that my Dad starts sweating profusely. No fever, but he starts sweating a lot (soaking wet) for a few hours and then it goes away by itself. We don't know about his blood pressure because at the home, they have an automatic machine which requires the patient to be totally still and with my dad's constant movements, they couldn't get a reliable reading.
But apparently there were no other symptoms apart from the incredible amount of perspiration. When it happened again last week, the nurse at the nursing home called my sister and asked whether they should send him to the hospital. We decided since there were no other sysmptoms (no cardiac problems, no breathing difficulties, no pain) to wait and see (because I had a feeling that it might be a result of autonomic dysfuncion) and Sherry (my sister) went immediately to the home. After a couple of hours the sweating subsided. Sherry made sure he received a lot of fluids and she fed him his dinner completely.
Any ideas? Is it really autonomic dysfunction or is this something we should be concerned about?
Shomy


Wed Nov 17, 2010 7:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Dad's rapid decline!
You probably have it right: Autonomic dysfunction. My husband has had some episodes of heavy sweating. Most of the time he doesn't sweat at all, which is just as strange. He frequently has hot flashes and his face will feel very hot [no fever] and his hands ice cold. Once in a while, his hands will feel warm and his face cold.

_________________
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 Nov 17, 2010 10:48 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad's rapid decline!
Shomy,
I think you hit it correctly,Autonomic Dysfunction, we had that for a long time also off and on, also had episodes of very oily skin, very shiny skin and everyday he was showered and it was right back several hours later, I also noticed a slight odor not a bad odor its hard to explain.

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Irene Selak


Wed Nov 17, 2010 11:00 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Dad's rapid decline - sweating
I'm glad you mentioned sweating. Dale's pillow case always requires special treatment in the wash. He lies in a pool of sweat almost every night. In the mornings, his cheeks are often pink. I've always wondered if it was a reaction to some meds. However, he doesn't complain about it.

Is it just another Lewy symptom?

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


Wed Nov 17, 2010 12:13 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Autonomic dysfunction (including thermoregulatory dysfunction) is a common non-motor symptom of Parkinson's Disease and many other neurodegenerative disorders.

We bought Tena-brand wipes, heated them slightly in the microwave, and used those to wipe down my father whenever it was needed.

You might put a cotton towel on top of the pillow and change it out at least once a day.


Wed Nov 17, 2010 1:18 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Dad's rapid decline - sweating
Is it just another Lewy symptom? [/color][/quote]


Leone,
Yes many have it !We did what Robin suggested with the pillows, just used towels! I also had double pillow protectors on under pillow cases and washed them often!

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Irene Selak


Wed Nov 17, 2010 1:41 pm
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