Tuesday, February 5, 2013

Mom's new nursing home

Every day when I go to visit mama in this new nursing home it gets worse & worse. Today I went to visit & she was a little better (a little more alert) than yesterday which indicates that the new breathing treatments are working well & not knocking her out as much. So I go & get dad bring him back to see her when I notice that she has a new patch behind her right ear. It looks familiar like the scopolamine patch she had once at the hospital that made her quite sick. The scopolamine is on her allergy list. They are never supposed to give it to her. So I walk down the hall & ask the nurse "What is the patch behind her ear?" She looks up mom's med list and says "There is no medication on her list that is a patch. It must not have been put on by us. Well she has been there since Thursday last week & if she hadn't been cleaned by then & the patch removed that's pretty sad. I had also been checking behind her ears everyday & I do mean EVERYDAY.
It wasn't there last night. So I told her that I checked her ear
last night & it wasn't there. How does the patch get on her if there are no orders for it & it isn't in her med list? And she says "Well I don't know because I didn't apply it" That's it. Just not my problem because I didn't apply it. No ideas of who I should take it up with. Nothing. So I said I am going down & removing it since it is prolly the one she's allergic to & there are no orders for it. Ok? She said sure. What else could she say? So I am walking around with the d*** thing on the end of my finger like an idiot not thinking of what it might do to me when she suggests I do something else with it. I put it on a paper towel intending to drive to every pharmacy, even an ER to ask if someone can identify what has been on my mom. I had to drive dad back to his nursing home & when I got there I asked his nurse if she knew what it looked like & she said scopolamine. The Fentanyl patch for pain is usually whiter & the nico???? patch is larger. This she said was the one from the allergic med list from the hospital. All I know is no wonder she hasn't been acting right since she got there. God knows what else they have been administering w/o MD orders?
I have been trying & trying to get her in another nursing home with no success so basically this place is going to be allowed to harm her. I am not finding many options.

Sunday, February 3, 2013

The 7 stages of Alzheimer's

7 Stages of Alzheimer's

The seven stages of Alzheimer's are helpful in finding the words to discuss Alzheimer's. Caregivers find them particularly useful in support groups, as well as in conversations with doctors and other professionals.

Although the progression of Alzheimer's disease can be slowed down today thanks to today's medications, it cannot as of yet be stopped. The process is described in general terms as going through 3 steps:

  1. Mild Alzheimer’s
  2. Moderate Alzheimer’s
  3. Severe Alzheimer’s.

For more meaningful terms between professionals, caregivers and patients, a more detailed process has been characterized in seven stages. The seven stages are based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center.

Stage 1 – Normal

This system calls a mentally healthy person at any age “Stage 1”.
  • No memory problems
  • No problems with orientation
    • person – your name, who you are;
    • place – what country, state, city you live in, where you are;
    • time – what day, date, season it is
  • No problems with judgment
  • No difficulties with communication skills
  • No problems with daily activities

Stage 2 – Normal Aged Forgetfulness

More than half of all people ages 65 and older complain of cognitive difficulties. This is considered a normal part of aging.
  • Occasional lapses in memory, usually undetectable to family and friends
  • Slight cognitive problems, also undetectable to friends and family, might also not be visible on medical exam

Stage 3 – Mild Cognitive Impairment

At this point, there are mild changes in memory, communication skills and/or behavior, noticeable to family members and friends. Symptoms might be picked up by an alert physician. Many people will not decline further than this point. Notwithstanding, a majority do progress to Mild Alzheimer’s within two to four years.
  • Problems remembering names, words for objects
  • Difficulties functioning at work and in social settings
  • Problems remembering newly-read material
  • Misplacing important items with increasing frequency
  • Decline in organizational skills and the ability to plan
  • Repeating questions and evident anxiety

Stage 4 – Mild Alzheimer’s

Cognitive symptoms are more obvious now. A neurologist can confidently diagnose Alzheimer's disease and treat it with medications that have been proven effective in slowing it down.
  • Difficulty remembering personal details, recent events
  • Some confusion possible (ie: might put towel in fridge)
  • Impaired mathematical ability, financial management (trouble managing a checkbook – for those who did not have trouble managing one before)
  • Social withdrawal
  • Moodiness, depression

Stage 5 – Moderate Alzheimer's

This is the stage at which it is not possible for a person with Alzheimer's to live alone.
  • Severe memory loss, e.g., may not remember basic personal contact information such as current address or phone number
  • Disorientation (not knowing the day/date/season, and/or location/country/state/city)
  • No longer safe to cook, even if the sufferer can manage or remember the logistics of the process, due to severe short-term memory difficulties and confusion
  • Wandering risk; might get lost once leaving the home
  • Decreased personal hygiene skills
  • Increased desire to sleep is common

Stage 6 – Moderately Severe Alzheimer's

It is at this stage that family members often suffer the most, because the loved one with Alzheimer's loses much of the ability to recognize those around him or her, even a spouse, sibling, parent or child. Personality changes are common as well.
  • Severe memory loss continues to intensify
  • Withdrawal from surroundings
  • Wandering
  • Reduced awareness of recent events
  • Problems recognizing loved ones, although it is still possible to differentiate between those who are familiar and those who are not
  • "Sundowning", if it has not yet begun, makes its appearance at this point – this is the phenomenon of increased restlessness and agitation toward sundown (hence the name), in the late afternoon and evening hours
  • Bathroom management becomes difficult; at this stage it often is necessary to switch to diapers due to incontinence, wetting and other such problems using the bathroom independently
  • Paranoia, suspiciousness
  • Shadowing, extreme anxiety, following a loved one around the house due to fears of being alone
  • Repetitive, compulsive behavior (verbal and/or nonverbal)

Stage 7 – Severe Alzheimer's

This is the final stage of Alzheimer's disease, at which the long goodbye comes to an end. Even though the Alzheimer's person may somewhere inside really hear and understand what is being said, he or she can no longer respond, other than possibly to speak a word or phrase.
  • Communication is very limited
  • Physical systems begin to deteriorate
  • Gross motor coordination shuts down, may not be able to sit
  • Swallowing may become difficult, choking is a risk
The last stage of Alzheimer's disease, as with any other illness, is a very individual matter and no two journeys end the same way. People with Alzheimer’s seem to experience little physical pain. What is certain, however, is that every Alzheimer's journey ends – as does every other. May they all be peaceful and pain free. 
My comments to the article:
Interesting. Dad was given a clinical definition of moderately severe alzheimer's over a year ago. However, from reading this list he is somewhere around 4 or 5. Oddly though he's got about one symptom from each of the different steps & none of the other symptoms from other steps.
Never wandered, never forgot people from recent or long ago past (but did mix up names), can't remember what he had for dinner but can play 21 as well as any of us. Has retained all basic math functions, decreased personal hygiene skills, increased desire to sleep, reduced awareness of recent events but still can handle a full phone conversation with me every evening with every word correct, mildly incontinent, no confusion, no agitation but no really recent memory. Remembers everything about every town he used to live in up to 2 years ago. I have both parents with alzheimer's & they are as different as snowflakes. My dad's dementia has not changed in over a year. The same impairments as a year ago but my mom went from 0 - almost dead in a year & a half. They are all so different. It makes me wonder if it is the brain & which sections are affected or what it is. At least my dad is with it enough to still have a high quality of life. 

Friday, February 1, 2013

Mom's 83rd Birthday Party - I am the one with my hand on her shoulders 83rd Birthday Party

Kerri & Brian Weant (my son & his wife), Grandfather, Grandma (B'day girl), Rachel Hamilton & Kevin Weant (my son) Grandma's 83rd Birthday - August 2013

Mom & Dad go to Prom

My Mom (Dorothy Harris) & Dad (Bob Harris) attending their senior prom

Advice for Caregivers

Thanks to Caring.com for sharing this advice for caregivers from Duke University social worker Lisa Gwyther:

* Focus on what's left, not what's lost.
* Good things and joy can happen to those who have Alzheimer's.
* You, not your relative, will need to change.
* Don't distress; de-stress.
* Your life is now about adapting to a chronic condition; creating a "new normal."
* This is the rainy day for which you have saved.
* There are no perfect answers, no perfect families.
* Memorize this: "I did what seemed best at the time."

Mom - Thursday, Jan. 31, 2013

Mom - Thursday, Jan. 31, 2013

Mom was accepted & admitted today to a new nursing home in Plano. They have round the clock respiratory therapy for her trache needs. It is a pretty nice room. The nurses are nice too. I met her pulmonologist today along with the head of the respiratory dept. when they came to speak with me & check her out. Best part is it is closer to my house.

Tuesday, January 29, 2013

Mom update - 1-28-2013

Both mom's doctor's called me today about mom's condition.  They both wanted to discharge her to go
back to her nursing home.  Her WBC was 13 this morning which means she still has an infection.  She is
not on any antibiotics.  I thought she might have a UTI and they sent out a sample.  The lab returned with
enough bacteria that I thought the ID doctor would start her on at least a mild UTI antibiotic before sending
her back to the nursing home.  Not so.  She says if we just keep giving her antibiotics she will become immune to more of them.  While this is true it doesn't seem like a good idea to send her back with it unresolved.  Since she wouldn't change her mind in a day or 2 it is wise to send her back I guess.  They can treat a UTI at the nursing home.  The strangest part of this is that most of these labs take 72 hours to return the full result that they prescribe the right antibiotics from.  The test tells them which will work.  It has been less than 48 hours since they took the sample so how she knows that she wouldn't want to prescribe antibiotics I don't know.  Now the nursing home will have to test her urine and start the whole process all over again or wait & obtain the labs at 72 hours from the hospital.  Like I say though if the facility can treat it when they want to what is the point of keeping her in the hospital longer & have the ID specialist say no we won't give antibiotics for it.  When I asked if the colonization was over 100,000 she said yes but it was a mix of different bacterias.  Don't know what that means but she is a little less responsive like she is when she has
a UTI.

Friday, January 25, 2013

Blog about moving close to adult children


http://www.incareofdad.com/blog/stranded-in-connecticut/
Full photo of the Blogspot photo

Mom - Friday, Jan. 25, 2013

Mom - Friday, January 25, 2013

Called the hospital today and her Hemoglobin is up to 10.? which is slowly climbing.  This is good.
However her white blood cell count has risen back to 13.  Not good so they were going to send her
back to the nursing home but will wait and collect a WBC count tomorrow.

When I saw her last night, 24th, she was showing signs of discomfort & I knew it had to be either
a passing stomach ache or the infection coming back & was looking for the WBC this AM to tell
me which it was but when I called no count had been ordered which was strange considering there
was one all week.  This AM would have been the 72 hours since last antibioitic dose which would
be when any infection would return.  So I called and as POA requested one & sure enough the
WBC is climbing back up.  I figured the dropping WBC through the week was while she was
still having the antibiotics in the system.  The funny thing is I expected it to be 13.  I have gotten to know her so well I could predict the count.

No new ones have been ordered and the Infectious Diseases MD hasn't seen her today or made
new orders.  Maybe they are waiting to see if the WBC is higher, same or lower tom.  She has had
an awful lot of antibioitics in her system.  Tomorrow we will see.  I am glad her hemoglobin is going
in the right direction.

Caregiving

Caregiving is some of the most difficult and demanding work that we will ever do. It demands great patience and strength of character. It is not a role for wimps or martyrs; it is a role for the courageous and the optimistic. 

You will probably have many moments of sorrow, even despair, but you will never, ever regret taking on this very difficult work. For the rest of your life, you will know that within you lives a hero.

Montessori Method for Alzheimer's


http://www.theglobeandmail.com/life/health-and-fitness/health/using-the-montessori-method-to-combat-dementia/article7819360/

Let It Be, Let It Go

http://www.alzheimersreadingroom.com/2012/03/let-it-be-let-it-go.html#more

Mom - Thursday., Jan. 24, 2013

Written January 24, 2013 AM

The WBC was down to 11 today which is great. The other place had really killed off all her good bacteria. It has also caused a new problem. Her hemaglobin fell to 5. She had to have a blood transfusion yesterday, Wed., and it brought up her count. Although her hebaglobin count has been around 9 something yesterday it was 5. Scared them. Anyway it was back up to 8.9 last night and today something like 9. But I am still trying to get them to do another transfusion or get a hematology consult & can't seem to get either even though the count is still low.

Mom - Wed,, Jan. 23, 2013

Written on January 23, 2013 

I went to see mom tonight at the hospital. She is much better. She smiled alot. The doctors all called today & mentioned the new orders & dc'd orders. After her WBC was 21 Monday night, 19 yesterday - it was 13 today. They stopped the antibiotics since they weren't indicated in the sensitivity culture. She is more like herself. It is nice to have her back.

Shut the closet doors

Dad has adopted a strange habit as his alzheimer's has advanced. In his nursing home room every closet door has to be completely closed (not even an inch open or ajar). The problem is if he forgets to close it himself before he gets in bed he orders me to close the slightly open closet door before I leave. He does not ask - he goes "Hey close the closet doors" Well in the last place if the sliding door was open a half an inch He would order me so I would just do it even if it was a crack. Tonight he was in bed & said hey close the door there & I said no you can handle that & I don't work at the nursing home. On my way down the hall I could hear him say - So you are going to make me get out of bed to do that? It struck me funny. No one was making him do anything. Why not just leave the closet doors ajar? He can either get up & close them or leave them ajar. I don't remember him being this OCD or persnickity? I have always wondered though if he is just used to barking orders at the staff & having them followed. He can always close them before getting in bed.

Dad's Mother in Law

Well tonight I went by to visit mama in the hospital first to see what kind of shape she was in before bringing Grandfather to see her. During her horrible night Tuesday night going into the ER she kept crying out for him so I knew I had to but wasn't going to put either of them through that if she wasn't in good shape. She had her eyes closed but I turned on the lights in the room & turned up the tv & started talking to her. Nothing. Then I walked out to hand papers to the nurse & walked back in & she was looking for me. I talked & sang a while & when I could see she was comfortable I went & brought dad to see her. I hadn't seen dad myself in a few nights because of all the business of her illness & getting her in a different building. He was doing well. They were each glad to see each other. 

The funniest thing happened when we got back to his nursing home. There was a female patient in a wheelchair facing the front window sound asleep with her stocking feet on the wing chair. I said hey dad come look at the lady in the window. Now this is about 11:00 at night. So dad says oh yeah that's my mother-in-law. I just started smiling. He was very pleased with her & whoever she was. I thought - he is finally making friends in there. Anyway I said dad she cannot be your mother-in-law. That would be Nannie Mattison. Then he stumbled over his words & said she runs my ______ I had no idea what he was trying to say & I said activities & he said yes. Well I know she doesn't do that but maybe she helps him out with something. Anyway it struck me funny how she watched out the window in the dark. It didn't occur to me til later that she may have been watching for him to come back. I am just so happy he has made friends in there no matter who they are. The way he makes himself a stranger in these places as if he isn't there for long seems a shame. Even if you are only there for a short while why not enjoy the stay with friends. Maybe they just share a table in the dining room. I am just so happy he has someone that makes him smile. Even if he thinks it is his mother-in-law.


It made me smile to think of the talks I used to have with mom when dad was in rehab in FL. She would constantly ask to speak with her brother Bill & her father. When I would reply that they had died & were in Heaven she would say "Oh that is ridiculous - someone would have told me - why didn't I get to go to the funeral?" & I would say that she had been to their funerals & had gotten to say Goodbye and that she had forgotten about it. She accepted that. But we did have that conversation often.

Facilities of Different Care Levels

PLEASE SHARE & PASS AROUND THIS STATUS TO SAVE ANY FAMILY & PATIENT OUT THERE THE PAIN & MEDICAL HELL WE HAVE BEEN THROUGH THIS PAST MONTH:

We need to help each other.

There are all different types of health care facilities.

There are skilled nursing facilities (nursing homes), there are Assisted Living Facilities (ALFs), Major Hospitals, & then there are LTAC hospitals (Long Term Acute Care Hospitals). The LTAC my mother has been in 3 times has an ICU but LTACs generally don't have ERs or Operating Rooms. The average stay for a patient at an LTAC is 28 days. The stay is covered by all types of insurers but getting admitted usually requires coming over from a major hospital. If an LTAC admits too many patients in a year that discharge prior to 28 days they pay a fine or penalty so for certain types of stays it is in the interest of the patient to go there. The problem is that if the patient is healthier a week after they go in there they will keep or make the patient suffer medically to justify the 28 day stay. There are ways to do this. My mother has stayed at this facility 3 times now. In March 2012 she went there to wean off a ventilator & onto a trache. They took good care of her & I was grateful to have her there because the major hospital had exhausted her days she could be there. W/O them she would have remained on a vent forever & had a lower quality of life since. When she got pneumonia the week of Thanksgiving in her nursing home we sent her to the major hospital. Then because she was getting IV antibiotics we sent her this same LTAC to complete her IV antibiotics. I did not realize that they would harm a patient to avoid that penalty for early withdrawal. I wasn't even aware of the early discharge fee. During the course of her stay they changed the course of very strong antibiotics 3 different times so that when she went back to her nursing home she was only healthy for 1 week & straight back to the ER. At this ER her bacteria was immune to 8 antibiotics so they had to put her on one that was $1,000.00 a dose. It was the only one left that would heal her. 4 doses a day. So before any other care costs she has had $4,000.00 a day of antibiotics going into her. Well a nursing home under nursing home medicaid cannot afford a patient on that price of antibiotic so where does that force her to go? Right back to the LTAC that made her immune to any cures
for future illnesses or suffering. And of course the 28 day stay again is going to force them to abuse antibiotics all over again. The 1,000.00 a dose Zosyn was supposed to be a 14 day course (not 28 days). The LTAC accepted her this time promising to only keep her the remainder of the 14 days while finishing the Zosyn. Then on the 14th day she looked great. Her WBC was 8.5. The pulmonologist recommended that they DC the Zosyn to get labs. The Infectious Disease specialist disagreed & the general attending did not have the power nor did the pulm. to overthrow the decision of the ID doc so they kept her on this powerful antibioitic past its normal course. By W-T her WBC was back up to 15, by F-S it was back down to 13 & she had been on Zosyn for 20 days. Past the 14th day she had new trouble breathing. This whole week her kidneys became comprised for the first time in 6 months & lungs took a hit. I tried to change her ID doctor & the place agreed but never did so which further harmed her. All of this was for the 28 day stay to avoid a penalty. My mother went to the ER with a white blood cell count of 21 & a BUN of 40. She is Severe Alzheimer's & is in medical hell because of a penalty for patients early DCs from LTACs. Be very cautious of admitting a frail person to a place that has an average stay of 28 days. And if you inquire of this to the admissions/marketing people at these places or to the discharge planner at a major hospital trying to get her out of the building (which is their job) they will most definitely lie to keep their job. You do not want to put your loved one through what my mother has been through this week. Also a POA, next of kin or legal guardian cannot get a patient out of an LTAC unless they want to do it AMA and pay the ambulance transfer costs & possibly the ER costs w/o insurance covering because it is AMA. I had to fight for 5 hours to get her out & almost couldn't get her out of there. The 5 hours further jeopardized her health. A POA or responsible party can always get a patient out of a nursing home or major hospital. Never at an LTAC. The patient can't even get themselves transferred or discharged. They keep you against patient wishes.

Caring

Did you know the people that are the strongest are usually the most sensitive? Did you know the people who exhibit the most kindness are the first to get mistreated? Did you know the one who takes care of others all the time are usually the ones who need it the most? Did you know the 3 hardest things to say are I love you, I'm sorry, and Help me. Sometimes just because a person looks happy, you have to look past their smile and see how much pain they may be in. I copied this from a friends wall because I thought it was powerfully true. We all need to pay more attention to those around us ♥ x 

Singing to an Alzheimer's Patient

Singing to my mom at the hospital or nursing home does calm her a great deal. I will have to learn some new songs though because there aren't enough of them that I remember the words to. I am still singing Christmas songs. She does like the 12 days of Christmas. Good for my memory too.
 
Mae was such a special lady. Couldn't have been more than 90 pounds soaking wet. She reminded me so much of my great aunt Faye. Mae was such a nervous little thing-always worried about what she should do or where she should go. As her disease progresses she was moved to our secured Memory care neighborhood. She became more frightened and really struggled every day. We would often sit on the sofa together and I would put my arm around her shoulders. Often I would sing softly to her as she put her head on my shoulder and drifted off to sleep. I think this was the only time her soul found peace. I don't know what horrible things had happened in her past that caused such torment in her life at this point, but it filled my heart to know that she was comforted by our time together.

Sleepless Nights

Coping With Sleepless Nights -

Write down all of your thoughts, concerns and to-dos before you go to bed. Since nothing is going to get accomplished in the middle of the night, you’ll feel some satisfaction knowing that everything you need to address is on that piece of paper waiting for the morning.