FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Sunday, May 31, 2015
Saturday, May 30, 2015
1 Listen to music
2 Toss a ball
3 Color pictures
8 Read out loud chapters from Harry Potter books or other favorite stories
10 String beads
11 Bake cookies
12 Take photos of the person and you and create a collage
13 Brush or comb one another’s hair
14 Participate in the Alzheimer’s Association Walk to End Alzheimer's.
16 Look at family photographs
18 Weed the flowerbed or tend to the garden
19 Fold laundry
21 Cut pictures out of greeting cards or magazines
22 Play dominoes
23 Ask the person about his or her favorite childhood books or cartoon characters (you can share yours too)
24 Bake homemade bread
26 Sing old songs
28 Put silverware away
32 Make a cherry pie
33 Play with tops or jacks
35 Take a walk around the yard
37 Reminisce about the first day of school
39 Make a fresh fruit salad
40 Sweep the patio
41 Color paper shamrocks green
42 Fold towels
43 Have an afternoon tea party
45 Look through the pages of a clothes catalog
46 Look at a map and identify countries
47 Make a family tree poster
49 Eat a picnic lunch outside
50 Water house plants
51 Play horseshoes
53 Watch Sesame Street together
55 Make holiday cards
56 Reminisce about favorite sports activities the person enjoyed while growing up
57 Write a letter to a friend or family member
58 Dress in your favorite sports’ teams’ colors
59 Pop popcorn
61 Give a manicure
64 Finish famous sayings
67 Look at pictures in a comic book
68 Put a puzzle together
70 Rub in hand lotion
71 Arrange fresh flowers
73 Recite nursery rhymes
74 Make peanut butter sandwiches
75 Cut up used paper for scratch paper
76 Blow bubbles
77 Take care of a fish tank
78 Bake cupcakes and decorate them
79 Interview the person about his or her life with a video camera or audio recorder
81 Finger paint
83 Put coins in a jar
84 Put bird seed out for the birds
85 Decorate a pumpkin
86 Reminisce about a favorite summer
87 Roll yarn into a ball
88 Trace and cut out autumn leaves
89 Cook a favorite family recipe together
90 Gather a yellow sponge, crayons, paper and tape and make a SpongeBob Square Pants 91
92 Give him or her a hug
95 Play a musical instrument
97 Ask the person to talk about his or her favorite sports hero
98 Sort playing cards
99 Ask the person about his or her favorite pet
100 Wash windows together
101 Ask the person about his or her first car
1. Listen to music in his room.
2. Listen to music with headphones on.
3. Watch the "cooking channel" on TV.
4. Watch DVDs especially ones that are colorful, active, and musical, like "South Pacific."
5. Sit outside in the sun.
6. Sit in the "Great Room/Library" on the first floor.
7. Look at pictures in the family album.
8. Sing together.
9. Make silly noises.
10. Tell him I love him.
11. Hold hands and be quiet together.
12. Push his wheelchair through the wings on his floor.
13. Go down to the community room for entertainment events.
14. Keep him hydrated.
15. Feed him snacks like yogurt, apple sauce, fruit, cookies, dark chocolate, pretzel rods.
16. Visit during lunch and/or dinner.
17. Bake special treats at home for him and bring them in to share together.
18. Read aloud.
19. Pump up the music real loud and play "rhythm band" with the instruments I brought in.
20. Put him through his body movement exercises.
21. Tell stories of the "olden days."
22. Stroke his arm or leg.
23. Give him a manicure.
24. Apply lotion to his hands, arms, and legs.
25. Give him a shave.
26. Wash his face with a hot cloth.
27. Talk to him as I water the plants in his room.
28. Visit with other residents (him sitting and listening.)
29. Tickling him.
30. Bumping heads and saying "Boink."
31. Kissing him.
32. Hugging him.
33. Telling him how important he is to me.
34. Tellingham he is handsome.
35. Stroking his face.
36. Combing his hair.
37. Slowing down for now. Might think of a few more items but think I have it pretty well covered.
Thursday, May 28, 2015
But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.
So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?
Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.
There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)
But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.
I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.
So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.
Have I rambled enough? Maybe this will help me get some sleep tonight!
He can feed himself a pretzel stick and finishes it most of the time. Sometimes he drops it and sometimes he forgets it's there, but for the most part he is "Pretzel Stick Literate!"
More often than not Manny or I help Gregory keep himself hydrated but he can once and a while list the glass to his lips and take a long drink of cold water.
Tuesday, May 26, 2015
Now that Gregory does not live in the home we created, I am sad but realize that the beautiful home we created together still exists for me and in us!
When I first put the tray onto the chair, I thought "Oh Fuck! It looks like a highchair!" So I took it off and put it away.
Today I put it on again and while it still looked "Oh Fuck!" I decided that it still may come in handy. The first experiment was to put a plate of blueberries on the tray and try to help Gregory feed himself. I don't think he got the idea but when I moved his fingers around he did grasp a berry and with physical encouragement he put it into his mouth. His response was, "Oh Yum!"
He was able to feed himself half a dozen or so berries but what I have found is that just because he succeeds in doing something, that does not mean he can do it in a repetitive fashion. He fumbled and dropped or just let his hand lie there. So sometimes he succeeded and other times I did it for him.
The experiment will continue and I'll send a photo of the tray on the chair, "Oh Fuck!"
Monday, May 25, 2015
Saturday, May 23, 2015
I didn't want to curtail his walking since he loved it so much. I always made sure he had his cell phone with him, although I was never sure he would remember to use it in case of emergency. If I got nervous, I would call him to make sure he was OK. He wouldn't be able to tell me where he was but he could describe a building or walk to the nearest corner (at my direction) and tell me the names of the streets. At one point I added ATT's "Family Map" so I could track his travels.
I decided that I would know when it was time to make a change even if it meant waiting until he was brought home by the police. I didn't have to worry for too long about getting a sign as shortly after we returned from a month in Mexico, he got lost in the building while returning the shopping cart from our condo to the lobby. He was gone for too long a time so I called his phone. He answered and told me he was lost. I asked if he was still on the elevator and he said no, he was on the ninth floor. I told him to wait and I'd be right there.
What had happened was that he got on the elevator and took too long to figure out which floor button to push. The doors closed and the automatic voice started instructing, "Select a floor. Select a floor." I am sure it made him even more nervous. Then the elevator went to the ninth floor because someone had called it and the elevator just followed instructions. Gregory got off the elevator and told me later that he walked with the cart from one end of the hall to the other but couldn't figure out where he was or what to do. He didn't think to call me so luckily I called him.
After this experience, I knew and even Gregory acknowledged the fact that he could no longer go out by himself and I joined him for his walks. When I arranged for college kids to be his companion they helped also. Thanks Ben, Ken, and Alaksh!
Gregory still enjoys the great outdoors and Manny takes him out during good weather into one of the two parks at Lieberman Center. Peaceful the Bear also likes to be in the sun!
Friday, May 22, 2015
Recently, a friend when asked if he wanted to visit Gregory with me after going out to breakfast replied, "I don't think so because last time I saw him he didn't know me. He kept looking away."
I think my reply was something like, "Maybe he was just distracted because you visited him on a day when a lot was going on around him." So we scheduled a visit.
In thinking about our upcoming visit I was wondering, "What if Gregory doesn't recognize him? What should my response be? Is that a good reason for a friend to no longer visit Gregory?"
Then I was reminded of a quote I read a long time ago about an old man who was asked why he got up early every morning and rode on a bus for an hour to go to the old people's home to visit his wife when she no longer knew who he was. His reply was simple but powerful, "She may not know who I am, but I know who she is!"
Unless a person with dementia is fully catatonic (and maybe even then) they enjoy visitors. They enjoy seeing someone who smiles at them, holds their hand, talks to them, strokes their head, gives them kisses. These are things everyone enjoys and in the narrow world of a memory care facility, perhaps they are enjoyed even more!
So I would hope that friends and family will continue visiting Gregory, when I go with them or if they go by themselves and whether he recognizes them or not, to help make his life a little bit more enjoyable and to make sure he knows that he is loved. Gregory may not know them but they know Gregory, and that matters.
Thursday, May 21, 2015
This Alzheimer's Blog continues to get 100+ hits a day. In June it will be 5 years old and with over 1087 posts, it has received 51,000+ hits. That is quite amazing to me.
It is read by people all over the world which is even more amazing! I truly appreciate that so many people are reading and following the blog and I hope that my writings have served to inform family and friends of Gregory's and my journey with Alzheimer's and that other readers have found the information useful, comforting, uplifting, supportive of their own journeys.
Of 51,000+ hits, there have been 348 comments left. I know that most people do not comment on any blog, I know that many family and friends have sent me separate e-mails in support. This amounts to point 7 percent or .07% of the readers who have commented.
What I would like, is to see many more comments made showing me that you are actively involved with these posts. You can sign in as "anonymous," or if you have an account on other services. You can add your name to the anonymous comment if you choose (or not!)
Your comment can be heart felt, deep, tear or joy filled ... or ... just something like, "I am with you." or "Thanks!"
It would make me feel very good to get these comments and I promise that I will reply to all that I receive. If you check the little box that says "Notify Me" you will get an e-mail letting you know that I sent a reply. That way we can complete the circle of communication.
SO HERE'S TO YOU AND LOOKING FORWARD TO HEARING FROM YOU!
Wednesday, May 20, 2015
We SKYPEd with Gabe who just finished his last final back at Chapman in Orange, CA.
Monday, May 18, 2015
These are my comments to her:
For one, I am very excited about two seemingly current movements: 1) Being more careful with "language" when describing people with dementia and recognizing that many of the "Inappropriate Behaviors," "Violence," "Acting Out," etc are more indicators of discomfort, fear, frustration, etc of not being able to communicate using the vary language that we so carelessly use! 2) Hearing from more people who have been diagnosed with dementia is so important to get a REAL picture of what is going on in their lives and on how they are and/or should be treated and cared for. I have to admit that as an educated, knowledgeable, caring person I almost didn't see being a care giver from that angle. In my case, Gregory was unable to communicate his needs but I did know him so well after 40+ years of a wonderful relationship I was able to know (for the most part) and meet his needs in a loving, respectful, honorable way. Thanks Kate for being there!
Sunday, May 17, 2015
Gregory divested all of his savings, investments, titles etc by giving them to me and I in turn gave them to the trust for which he acts as trustee. This maneuver helped Gregory qualify for Medicaid some ten years later.
Making these "end of life" decisions was not easy, but every time we left our lawyer's office we felt a sense of empowerment over being able to control some of our future.
For example, for a while we struggled with deciding between burial and cremation but the decision became much easier when we realized that the issue was not burial vs cremation, but rather that we wanted to live, not to die. And since we cannot control that, the decision came easily. Cremation it is.
We had to name the trust and decided to choose a sound bite that we had been using since we received the diagnosis of Alzheimer's: I love you more than ever and our love will continue to grow as it has since the day we met!
So it became: The More Than Ever Trust FBO (for the benefit of)) Michael A. Horvich 1997. I will also act as the current trustee with provisions are made in the trust to take care of Gregory L. Maire in the event that I pre-decease him.
The other day, I visited our lawyer again to make sure our "papers" were all in order and to set up La Casa Norte as recipient of some of our estate when we die to provide education / job training for candidates select by Casa Norte who through their community programs have proven themselves capable and serious about improving their life though education.
This is a video of my telling Gregory about the Educational Foundation. I think he understood and his engagement and amazement at the possibility of doing this is apparent.
We have been working with Casa Norte for many years via cash donations, attending events, donating Michael's photography and jewelry to auctions, giving many of Gregory's computers, desks, chairs, and lamps to their newly opened half-way house when he closed his business, sending outlived clothing to their Care Closet in which young men can choose clothing for job interviews (can you imagine how excited they would be when finding one of Gregory's expensive Armini suits or shirts and expensive shoes on the closet racks?) and giving food to their community pantry.
Casa Norte's mission is to serve youth and families confronting homelessness providing access to stable housing and deliver comprehensive services that act as a catalyst to transform lives and communities. So Casa Norte seemed to Gregory and I, the most logical place to lend our support and a "passing it forward" for been so fortunate to have lived the life and love Gregory and I shared.
This is a second video the shows Gregory's continued excitement about this decision which we had talked about many times in the past when he was more able to do so and his joy at our being able to do this.
Here are a few of the wonderful things Casa Norte is doing:
HousingLa Casa Norte follows a housing first model and offers a continuum of housing resources and opportunities to youth and families who are at-risk or experiencing homelessness throughout 43 different zip codes in Chicago.
Our programs include permanent, transitional, and emergency housing options that aim to support our clients as they work towards long-term stability and self-sufficiency.
We collaborate with a large network of property owners to increase housing stability and opportunities throughout the community.
Support ServicesAt La Casa Norte, we believe that both, housing and supportive services are critical to ending homelessness. Our programs include life-skills and technology training, education support, employment-readiness, case management, therapy, food, clothing, and transportation assistance.
Our efforts to collaborate with an extensive network of human service organizations allow us to offer additional resources to our clients. Through the support of our partners, we are also able to offer clients access to mental health and substance abuse treatment, medical care, day care, legal advocacy and other needed assistance to support their increased housing and economic stability.
Saturday, May 16, 2015
Susan McCauly shares some perspective on how language affects how we deal with and see Alzheimer's.
She shares a wonderful look at Alzheimer's which begins to see the good parts of a person that continue as the disease progresses rather than listing the stages of loss and inability. I have found that in my readings, web searches, fellow bloger posts, etc., this change in focus is becoming stronger. What do you think?
"Amazing Susan" says: To help us understand dementia, experts have come up with ways of describing different phases of the disease:
1) The Alzheimer’s Scale (3 stages): mild, moderate, late.
2) Four-Stage Model (4 stages): early, middle, late, end-of-life.
3) Global deterioration (7 stages): no impairment, very mild decline,
mild decline, moderate decline, moderately severe decline, severe
decline, and very severe decline. (Keep those sorted one from the other
if you can!)
These scales and descriptors focus decline and loss rather than on the richness of the human experience.
At best, they set us up to see the glass half empty rather than half full; at worst they foster the belief that people with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion.
This overwhelmingly negative perspective is an injustice to people who have dementia, and is problematic in all kinds of other ways. Among them:
No wonder we are all so terrified of this “horrible” disease!
But it doesn’t have to be like this. I know because I have discovered
treasures amidst the tragedy.
One simple way to transform the way we see the disease and the people who have it is to use a positive approach centered on people’s humanity and on what they can do rather than on what they can’t.
Go to Susan's site to check out Tepia Snow's look at the gem approach to talking about Alzheimer's Disease.