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.

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. 

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

s 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.