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.
Thursday, January 30, 2014
It takes time for the workers and nurses to get to know the residents routines and needs, rhythms and patterns. As you know, we have had two Care Conferences dealing with these things. Everyone on the floor is friendly, helpful, and wanting to do the best for Gregory.
So why is it not always a good thing. Would you believe two falls and one fright so far? The day after he was at Lieberman, the nurse called me around 8:00 pm to say Gregory had been sitting on the sofa in front of the TV and when he got up he fell on his knees. No great damage. No broken skin. A little pink. Nothing more. But wanted me to know. I thanked her and it felt good that they were keeping me informed.
Last week, I noticed that Gregory's ankles were swollen and I told the nurse. Later that week I notice that his ankles were very very swollen and mentioned it to the nurse again. At midnight she called at home and told me that she checked and sure enough they were so swollen that she called the doctor. He told her that Gregory could go to the emergency room for a workup or she could order a blood clot scan the next morning.
She and I talked about the implications and I decided that we could wait until morning for the test that would take place at Lieberman instead of putting Gregory though the trauma of a middle of the night emergency room visit. One possibility in waiting was that if he had indeed thrown a blood clot, it could travel to his brain or heart.
I told the nurse that while I hoped that wouldn't happen, we were not afraid of death. It was a hard decision for me to make and I had a hard time falling asleep. Finally, I said out loud, "Universe, if you are ready to take Gregory, please go ahead, I am ready, he is ready, and you have our permission." That said, I fell asleep easily.
Next day the clot scan showed no clots, they put him in special stockings to help with the swelling, and the ankles have looked better each day.
Finally, at seven AM this morning, I got a call from Lieberman that Gregory, after being up and dressed, fell backwards in his room (there by himself) and was found on the floor with a gash in his head, a bruse on his forehead, and in a lot of pain. They had called 911 and the ambulance had just arrived to take him to the hospital (which by the way is just across the parking lot.)
I had my clothes on and was out of the door (without any breakfast and not even one cup of coffee) in five minutes and got to the emergency room less than 10 minutes later. I am grateful that Lieberman Center and the hospital are so close to the condo.
Gregory looked terrible and was moaning with pain but had been able to remain calm throughout the ordeal. He was happy to see me and I soothed, stroked his hand, etc. They did a CAT scan and several X-Rays and found no additional damage. After the blood was cleaned up he didn't look quite so bad (head wounds bleed profusely.) Eight stitches later and a breakfast of oatmeal and pancakes the ambulance picked him up for the trip across the parking lot back to Lieberman.
Gregory after napping on and off in his own bed in his own room back at Lieberman and after a hearty lunch is with Alaksh (who I called for support right away, not knowing how severe the injury had been.) I am at home getting ready for a 90 minute massage and then will go back to sit with Gregory.
While this all might seem difficult, it has been surprisingly easy to get through and to make decisions about. In my role of Secondary Care Giver, which you have already heard about and will probably hear about again, it is good to have so many resources and people supporting me and caring for Gregory.
Besides the people that got him ready for the first ambulance trip, so many people have checked in since our return to his room: head nurse, day nurse, the social worker, his day caregiver, the lunch lady, and various higher level supervisors. Gregory is indeed being well taken care of.
Sorry for the pix but in an effort to fully document ... PS later I will post a photo of how GOOD Gregory looks after the episode.
Wednesday, January 29, 2014
While many of them are a tribute to me (felt good, thanks) I am sharing them more for those of you out there who are deeply involved yourself in loving someone with dementia.
Gregory and I have so many loving friends and family members that I felt it my responsibility to keep everyone up to date on his "progress." Also, when people would visit us, they would know what to expect and how to behave.
Not being in frequent contact with many of our family and friends and with many being spread out all across the country, I felt e-mail and periodically Facebook was a good way to do so.
The comments were pleasantly unexpected. The support welcome.
Thoughts to you
Tuesday, January 28, 2014
It is NOT PAINFUL when I wake up in the middle of the night or in the early morning realizing that Gregory is not in bed with me and realizing that he no longer lives at home in the condo with me. I am slowly learning to deal with that.
It IS PAINFUL is when I wake up in the middle of the night or in the early morning forgetting that Gregory is not in bed with me and forgetting that he no longer lives at home in the condo with me.
His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.
He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.
He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.
He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.
Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.
I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears, to live for the loss.
Monday, January 27, 2014
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.
Intake meeting. No notes
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.
One item at a time helps
Sometimes uses fork
Can use spoon more easily
Uses fingers to assist
When is shower?
Likes to take naps
Used to have coffee & cookies every day at 5
Art (painting with oil sticks)
Reading out loud
TV Big Bang Theory
Looking at picture books
Likes body massage
Hang pictures and clock
Cost of laundry?
Liquid vitamins and Liquid minerals easiest (I will buy)
Bed call button broken
Higher toilet support rails?
Do you need visitor list?
Prostrate cancer watch
HIV test results?
Tushie rash/fungus medicine
Ear dryness medicine
Butt pain/spasms at times
Likes dried fruit: prune, apricot
Prune juice needed
Other visit schedules?
Kinds of activities?
More meal support?
Likes unsalted, raw nuts
Bedtime clothes vs Daytime clothes
Sunday, January 26, 2014
All kinds of dogs (belonging to residents, families, volunteers, employees, staff, etc) participated in a dog show in the main social hall on the first floor. Several hundred residents (in all states of ability and awareness) and their families joined in the fun.
Chairs, wheel chairs, beds, and other strange looking machinery congregated in a circle around the center "show floor." A table of judges awarded prizes. Various award areas included among many: best trick, nicest coat, cutest dog, best behaved, owner/dog look alike, and shyest.
Throughout the show, the dogs were walked around the floor so residents could get a close up look and possibly to pet them. Every now and then a minor scuffle between dogs (and once between residents) broke out.
The "dog handlers" were all amateurs. The event, while well organized, fluttered and stopped depending on the goings on and/or needs of the residents. The "parade music" was sometimes too loud and sometimes too soft. I am not sure how alert the judges were, or how discriminating for that mater. The awards were blue paper circles with paper ribbons attached and magic marker printed categories.
Many of the residents were looking in the wrong directions, or slumped over asleep, or talking to themselves, or just not present. Many of the residents were smiling, attending, petting, laughing, and having a generally good time.
Refreshment included make-it-yourself powdered hot chocolate and wafer cookies.
The beautiful thing about this is that it took place as an important "something to do." Many people were cheered up. Advertisements were posted on each floor and on the elevators. People looked forward to the event and discussed it (if able to do so) over dinner. The residents felt a little better, the families who attended felt a little better, and my guess is that the dogs felt a sense of altruism!
So if this was only a PRETEND dog show, and if much of it was past the ability or attention span of many of the attendees, it moved me with its respect for fellow humanity and the recognition that each human life, no matter how diminished; is worthwhile, to be valued, to be loved.
Saturday, January 25, 2014
Alan Edward Maire, age 77, a resident of Tome, NM passed away on Thursday, the 9th of January, 2014.
Al was a proud veteran of the United States Marine Corp, hurrah! For a number of years he was active with the Belen Model Railroad Club and also enjoyed working with his model train setup at home. In his earlier years he worked at Maireco, Robertshaw Controls, in advertising in Connecticut, and with Nobel/Sysco in New Mexico.
Alan was a very accomplished artist in wood carving, specializing in native American and Western figurines, showing works in Santa Fe and Taos. His pieces are in homes around the United States and Switzerland.
Alan was preceded in death by his parents, Edward Benson Maire and Helen Godskenson Maire of Goshen, Indiana.
He is survived by his wife of 30 years, Iris Ann Jones Maire; three children, a son, Edward Maire and wife, Barbara of Claremore, OK, daughter, Michelle Brown and husband, Mark of Las Curses, NM, and daughter, Danielle Maire and friend Jolene of San Angelo, TX; also the childrens mother, Dellaura Riggles of Indiana. Al has four step-children who loved him very much. They are Terri Ackerman and husband, Dale of Loch Buie, CO, Kymberly Dunning and fiancé, Jeff of Annapolis, MD, Marcus Dunning and wife, Holly of Albuquerque, NM, and Michael Dunning of West Jordan, UT.
Al is survived by his brothers, John Mark Maire and wife, Diane of Battle Creek, MI, and Gregory Maire and spouse Michael of Evanston, IL; two nieces, Elizabeth Karper and Renee Breitbach; and one nephew Mark Maire; Sixteen grandchildren, Ted Duke, Jake Maire, Jesse Maire, Sarah Brown Morris, Corrie Brown Wescott, Ambyr Carolus, Austin Carter, Tyler Carter, Chase Ryan, Samantha Ryan, Jessyka Dunning, Marcus Anthony Dunning, Tre Dunning, Cameron Dunning, Baylee Dunning, and Sidney Dunning; Eleven great grandchildren, Charlie and Lola Duke, Corbin Maire, Dylan, Devon, Wyatt, and Allie Morris, Shaylee Wescott, Amariana Carolus, Avery Carter, and Kaiden Dunning. Al was looking forward to another little one in March.
A special thank you to the fine staff in the emergency room and the second floor of the Heart Hospital for the tender care that was given to Alan the short time he was there.
A Memorial service will be held at Santa Fe National Cemetery on Wednesday, January 22 at 10:30 am.
Arrangements are being handled by the caring professionals at the Noblin Funeral Service Belen Chapel, 418 W. Reinken Ave., (505) 864-4448.
Thursday, January 23, 2014
Wednesday, January 22, 2014
Tuesday, January 21, 2014
At the beginning of 2014 you received an e-mail blast about Gregory's decline. I guess that in some ways I had a fore-telling of what was to come a short couple of days later. Now with the current changes, I have told our story so many times that I do not remember what I have told to whom. I wanted to do one last e-mail blast to make sure everyone is up to speed on our situation.
After a very difficult year, then month, then week; ending in what I call a Final Week in Hell; Gregory (diagnosed ten years ago with Young Onset Alzheimer's at age 55) is now living at a memory care facility. After a major psychotic episode (common at his stage of the disease,) I had to decide on this placement for him. He was in the hospital for observation for a week and on sedatives to help him for less than a week and now no longer needs them. He is once again calm, happy, and content. He is being well looked after, I visit every day, and he has NOT once asked, "Why the change?" For now, he is truly living in the moment.
In all honesty, I do not know for sure who Gregory is at this point. The change was so drastic that I do not know what he knows, or thinks, or feels. As I said above, what I do know is that he is calm, content, happy, safe, and living in the moment. He is more unsure on his feet, moves a lot more slowly, and to me feels a lot older than he was a few short weeks ago. Strangely enough, however, he has been able to put together phrases that make sense and has re-developed a sense of humor (both of which have been absent for quite a while.) Have you ever thought how complex it is to tell a joke or be funny?
It was a necessary but none-the-less difficult decision. I was no longer able to support him in the way he needed to be supported: physically, mentally, emotionally. I always said that I would take care of him as long as I could and as long as it was the right thing to do ... not for me ... but for him. Now both Gregory and I can begin to adjust to the next phases of our lives. We walked together respectfully and lovingly for 38 years, ten of those with the Alzheimer's diagnosis, and now our paths diverge. The divergence actually began on January 10th, our 38th anniversary. That date will now be the anniversary of our meeting as well as our new beginnings. I am so sad but my heart feels good and right.
Thanks for being there for us over the years. You have played a significant role in Gregory's and my life and therefore over time I have felt it important to keep you informed of our progress, whether we were integrating or disintegrating. At this point further updates most likely will not be necessary. If you want to keep up on how things continue to settle in as Gregory and I get used to our new digs, roles, and lives; check my BLOG when and if you feel you want to: http://mhorvichcares.blogspot.com Also, if you are in the area and would like to join me on a visit to Gregory at The Lieberman Center, feel free to get in touch and we can make arrangements.
A metaphor for this recent change in our life: "We had rehearsed for this for a long time without knowing when opening night would be. Then "Curtain in 15 minutes" was announced and we were not even in costume or makeup. When the curtain did go up, however, everyone was in their places and the show went on without a hitch.
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!
Saturday, January 18, 2014
Gigi, Gregory's chosen kitten who is somewhat aloof and loves only in her own time, came to me while I was weeping to offer her support! She hopped into bed, came up by the pillow, licked my face, and let me pet her for quite a while.
I feel the sadness rise in me and try to damp it down. Suppress it. Hold it in. Tell it, "Go away!"
The tears begin. The sobs begin. The shaking. The howling. The gasping. The flood. The tsunami.
So many never-agains. So many for-evers. So many never-to-be futures for him, for me, for us.
I miss my friend, my love, my partner, my soul mate, the only one who really matters to me.
Never to be held. Or rocked. Or poked. Or joked. In the same way now as then. Never again.
Never to be supported but to support him. Never to calmed but to calm him. Never to be OK again.
Never to ease my pain but to be in pain so strong, so sad, so deep, so insidious, so lasting.
I miss him so much. What he used to be. What he has been. What he could have been yet.
I miss us so very much. What we used to be. What we have been. What we could have been yet.
I miss myself so much. What I used to be. What I have been. What I will yet become without him.
Change is so hard. A rock and a pitcher. A rock and a hard place. Rock, Paper, Scissors. Broken.
The tears continue. The sobs continue, The howling gets louder. The future grieves and so do I.
Friday, January 17, 2014
Hi. Greg continues to settle in. I go every day to visit but only for an hour or two. I am hard at work learning my new role as secondary caregiver. They are getting to know him and how to provide for him. He is content and "spends his day." To be with him is to realize that he is a very different man than he was before the psychotic episode. He is really living in the moment and is happy with that. Today we visited with his companion Alaksh and G was happy to see him. We set up a desk for him, stocked his mini-refrigerator, assembled two lovely lamps - one for the desk and a matching one on his night stand. I am creating a refuge for him but mostly for me and his visitors away from the Fellini environment that is any nursing care center. Day by day...
Thursday, January 16, 2014