Care Conferences

So far there have been three "Care Conferences" and countless small interactions with the Fifth Floor Lieberman staff to discuss particulars for Gregory's care. Predicate this post by saying the I know that "I AM THE ONLY ONE WHO CAN REALLY BEST TAKE CARE OF GREGORY." then add that I also know that while this is true, it doesn't matter and there are many people who are already taking good care of him.

This actually was something I dealt with long before he went into Lieberman and it gave me a lot of grief. Now that we are in the heat of it, I am OK with being part of the Secondary Caregiver Team and giving Lieberman the primary position!

Being aware of the finer details of Gregory's needs has been an interesting exercise. I was amazed at having to think through the "details" of my caregiving. Some things I left out (but since mentioned to the team) like his sitting to pee, his being on a Glaucoma watch (not major but a very very slight increase in the eye pressure,) and his need for prunes to keep regular.

I know that I this may be too personal for some of you, but the need for documenting our continued Alzheimer's experiences with the hope of not only documenting but also the possibility that the words might support someone who needs to hear them, I need to be honest and upfront if not detailed. (I do hold back a little:-)

FYI: Here are the notes so far. I keep a running list of notes to aid my memory and to allow for followup. At the meeting I hand each participant a copy. So far these meetings have included the social worker, social worker supervisor, head nurse, nutritionist, activity director, and volunteer coordinator. Impressed? I was and continue to be!

You do not need to read through all of these details but I wanted to "paint" a picture of the kinds of things I have been having to share with the staff so they can better provide for Gregory.

Saturday:     01/11/14 

Intake meeting. No notes

Monday:     01/14/14

Didn’t eat much for lunch and dinner. Did he receive support?
After dinner ended up in his room behind ½ closed door and peed self. Embarassed.
I changed him.

Needs help and encouragement eating
One item at a time helps
Sometimes uses fork
Can use spoon more easily
Uses fingers to assist 

Who does nails? hair? deodorant? body cream? face cream?
When is shower? 

To bed by midnight up by ten 
Likes to take naps
Used to have coffee & cookies every day at 5
Music (classical)
Art (painting with oil sticks)
Reading out loud
TV Big Bang Theory
Looking at picture books
Likes body massage
Avid swimmer

Move armoire out 
Hang pictures and clock

Cost of Aricept and Namenda by me vs by Lieberman?
Cost of laundry?

Physical therapy? Check out swallowing & biting food?

Raspberry Jam helps with pills

Liquid vitamins and Liquid minerals easiest (I will buy)

Wednesday: 1/22/14

Bed call button broken
Higher toilet support rails?
TV list?
Do you need visitor list?

Liquid Vitamins & Minerals
Glaucoma watch
Prostrate cancer watch
HIV test results?
Tushie rash/fungus medicine
Ear dryness medicine
Wet wipes
Butt pain/spasms at times
Constipation
Pee/Poop records?
Likes dried fruit: prune, apricot
Prune juice needed
Reading glasses

Haircut schedule?
Massage schedule?
Other visit schedules?
Art Therapy/supplies?
Activity schedule?
Kinds of activities?
Volunteer activities?
Shower schedule?
Shower shoes?

Eating better.
More meal support?
Likes unsalted, raw nuts

Bedtime clothes vs Daytime clothes

"The Cleaner Floor" A book by I. P. Standing

Men are known to stand while peeing. Women are known to sit while peeing. Leaving the toilet lid up ... or down ... has been debated since the beginning of the flush.

Women also squat, especially in public, filthy bathrooms or in the forest preserve (watch out for the Poison Ivy.) Men have it a little easier in that they can aim the hose and avoid such disgusting situations.

But sometimes, men sit. Yes, you read it here. Gregory and I sit when we pee (at least at home we do.) Why you may ask? And why BLOG about it you may wonder?

First, even though you might think it would be easier for a man to take a fast whizz standing, it is actually just as easy to drop trow and sit to pee. Especially in the cleanliness of one's own bathroom. By sitting you can gain a few moments of meditation time and solitude from a busy day. You can catch up on a magazine article if you choose. On an active day, you can get off your feet for a few moments. And the floor definitely stays cleaner.

The real reason I post this is because with Gregory's change in living situation, and during his stay in the hospital, he had urination difficulties. Couldn't pee? No. His caregivers assumed that he stood to pee so would take him to the bathroom and stand him in front of the toilet. With no results.

Eventually he had to be catherized and they found 500 cc of urine in his bladder. Usually when a person gets +/- 250 they begin to feel the need to pee. Gregory was either not able to communicate this, and/or didn't recognize the signals, and/or didn't recognize what he was to do by standing in front of the toilet.

When I found out about his being catheterized,  I realized  I had not mentioned his sitting to pee. I took that minor fact for granted since it is what we have always done for over 38 years! Once it was established, Gregory had no problem with peeing. Problem solved.

Well solved at the hospital but now at the memory care facility, at times Gregory feels stubborn and refuses to sit when asked to. Also, for a while the staff was not taking him to pee every couple of hours so he found a corner in his room and wet his pants. (I found him behind his room door looking very embarrassed and standing in a puddle. Made me cry.) You know I'll be keeping up with staff on this one!

I have found (as I continue to fill in the cross word puzzle that is Gregory's new living situation at a memory care facility) I have to analyze the details of his life so they can provide more accurately for his needs. Especially since he cannot himself instruct the slew of new caregivers (according to the shift, the day of the week, the days off, etc.)

My new role as secondary caregiver continues to develop. At the first Care Conference with the Head Nurse, Dietitian, and Social Worker we focused on medications, eating, toileting, daily routine, personal grooming, etc. At the next one tomorrow, the topics will include a review of how he is settling in; how staff is meeting his needs as discussed as the previous meeting; a closer look at what kind of activities he will be participating in; schedules for shower, haircut, massage, doctors, etc; switching from a large handful of vitamins and minerals (which he has had difficulty swallowing) to a spoonful of liquid supplements; visiting volunteer opportunities for him, and a few others.

He has continued to be calm (without the sedatives needed when he was at the hospital,) happy, and content. He is living in the moment. Not once has he wondered about why he is there or asked about "home at the condo." He doesn't seem to notice the array of patients on his floor: all of them older, most of them with more advanced dementias, many in wheel chairs, many catatonic, many sleeping most of the time, incontinence here and there. In fact when one calls out, Gregory wants to help. As he roams (strolls) the halls, he smiles at them kindly. He has quickly become one of the favorites of the nurses and staff and they comment on what a lovely, kind, gentle man his is.

And since he is content and doesn't notice that being there is like being in a Fellini movie without the background music, I don't mind it either and am able to see the place through Gregory's eyes. Safe, clean, warm, active, happy!