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.
Wednesday, December 31, 2014
|Dear Readers and Followers,|
This from http://www.dailyom.com (opens in a new window.)
I usually do not put much thought into horoscope readings but this one seems so very fitting for the New Year that I wanted to share it with you today. It seems to have hit "my nail on the head!"
One of the ways I was able to get through this Christmas and New Year's season, the first after 40 years without Gregory being home with me, was to think about what our life, his and mine, was like last year at this time.
To say the least, it was horrible. Gregory was having a harder and harder time coping with his world and I was having more and more difficulty coping with Gregory in his world and trying to provide any sense of "normalcy" and routine for him.
It was very difficult trying to live in his world with him while still being part of my own world, and the two were becoming more and more difficult to reconcile.
On beginning the new year, we are both in very good places both physically and mentally. Gregory seems to enjoy his new home. his new family, his new community at The Lieberman Center and I have settled into living on my own.
Being with him every day gives me great pleasure and he continues to be pleased to see me. Manny provides such wonderful attention to Gregory when I am not there and this provides me with great peace of mind. The Lieberman Center provides respectful, thoughtful, caring attention to all of Gregory's needs.
Happy New Year. Thanks for being part of my "reading/sharing public." I do not know who most of you are and that does not matter. What matters is that somehow, what I write helps you keep up with Gregory and my journey and possibly helps you with yours. I appreciate you!
Tuesday, December 30, 2014
Meanwhile I had a talk with Lieberman's Fifth Floor head nurse director about Hospice. We had talked previously and she suggested that it is never too soon to get Hospice set up as there are many side benefits, some of which I will share at a later date.
Gregory and I have long been familiar with Hospice ever since he took training some 30 years ago and actually helped care for two people before he found a full time job and did not have time to volunteer.
He would help the caregiver(s) clean the house, go grocery shopping, help with cooking, or just sit will the ill family member so the caregiver could run errands, get away, or hide out and nap in the other bedroom.
Midwest Hospice has as it's mission: We support he whole person - body, mind, and spirit, with truly innovative world-class palliative care, hospice, and grief support. Giving you your best day, today! Imagine care differently!
In the past, Hospice was involved during the last week or month of a person's life to help them die comfortably and gracefully and to support the family as well. Now the services and time provided by Hospice has broadened.
After facing my decision to NOT send Gregory to the ER, as a staff doctor had recommended, I decided that this was a head's up to get Hospice going for Gregory. It is a difficult decision if only because it admits and accepts that he will die sooner rather than later.
Intellectually I accept this easily and will be able to make appropriate decisions as I am needed to. Emotionally is another story but I do not have to deal with that now as G is still fairly healthy and who knows when death will announce itself. No use in worrying about that which one cannot control.
Actually I feel a level of power and control over my life, Gregory's life, and over the situation having been able to make this decision. Hospice will provide needed services now and will be there when I need them the most at a later date. By then they will know me and know Gregory and will be part of our "family."
Meanwhile on a lighter note, here is verbatim, Manny's report on how Gregory is doing today as taken from his texts to me. Manny has a wicked sense of humor as demonstrated below.
Monday, December 29, 2014
Mine started on Christmas Day.
Not sure when G's started.
Mine: fever 101+, cough, congestion, sinus burning, short breath, bloated, minor ache, chest pain, sleeping, dizzy.
I have a call into my doctor and have Isaac around to help if needed.
I asked Manny to come in earlier and stay later during Gregory's illness.
The difference is that I can communicate my aches and pains and needs while Gregory cannot. I wonder if the flu is worse when you can gripe about it or when you don't know the difference, just that you don't feel right?
I am happy that Manny can spend more time with him.
Sunday, December 28, 2014
While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.
But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.
So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.
Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.
Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.
Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.
He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.
Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.
What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.
I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.
If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.
I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.
Wednesday, December 24, 2014
Santa himself has little about him to do with Christmas except that the joy he brings dates back to when most of the residents at Lieberman, Jewish and non-Jewish, were children and/or celebrating the holidays with their children and grand-children.
Next, why shouldn't Lieberman honor those of other religions while retaining the Jewish heritage. And they did that today.
I do have to admit that when I arrived at 10:10, ringing my bell, in full Santa costume and began my "schtick," it was like playing to an audience at a Catskills Resort with the wrong set of jokes and bombing ... yet having to continue performing for an hour.
Being quite old and functioning at a lower level than many assisted living facilities, the energy and volume of Christmas Carole singing was fairly low. Friends Jan and Cheryl and God Son Isaac helped bring up the pace and level of participation.
After my opening comments, I spent time with each resident: holding their hand, asking questions, smiling, clowning around. People enjoyed my antics and posed for photos that were taken by Jan.
Several of the residents knew me from the Sunday Entertainments and gave kisses. At the end of the show everyone received a bag of silver coin chocolate. One resident prior to my passing them out was brazen enough to ask, "Did you bring gifts?"
Besides cheering up approximately 12 residents and 6 or 8 helpers, many of the staff wanted to take a photo with Santa to send it to their children, nieces, or nephews.
Three highlights: two positive, one negative, in all wonderful!
A fairly old and fairly ill black woman was in bed, unable to come to the party. Her helper asked me to come into the room to greet her. Frail, thin, bent over. Yet so excited that Santa had come to visit that she could barely contain herself, repeating, "Santa, Santa, Santa." I kneeled down next to her bed so we could pose for a photo and I asked her, "Have you been a good girl?" Her reply was, "Yes I have been very good so far this morning!"
One woman took my hand sincerely and said, "Bless you Father Christmas!" Wow!
The son of one resident, himself quite old, asked me if I was Jewish. I told him I was. In an aggravated tone he asked me why was I doing this then since Lieberman is a Jewish place. I told him it was for those people at Lieberman who were not Jewish. He replied that 90% of the residents are Jewish. I finished by saying, "Then I did it for those 10% who are not and who are entitled to celebrate their religion!" He looked away with disgust.
Tuesday, December 23, 2014
Saturday, December 20, 2014
Thursday, December 18, 2014
I stopped and leaned over to show her I was listening.
"I want to get out of here!" she said meaning she was done with dinner and wanted to leave the dining room.
I gave my usual reply to situations like this, "The helper will come to get you next. You have to be patient."
She reached up, grabbed my beard, and with each word gave a fairly strong pull, "That - is - what - they - always - say!" And she let go.
"They have you on the list and won't forget you," my usual reply, but this time amused at her approach.
"I know. I will be patient. Thank you for your help." she smiled through her plaque coated, uneven, yellow teeth. This time without a hiss but with love.
Wednesday, December 17, 2014
I wrote this reply to their reminder invitation:
K & V,
Tuesday, December 16, 2014
One thing I have always done since Gregory entered Lieberman Memory Care, is to be very open about our relationship and about my love for him.
I feel no embarrassment at hugging or kissing him when I want to or when he needs me to, even if we are in a large group of people. If he cries with joy or frustration, I feel no problem in hugging him and rocking with him.
Our relationship, same sex relationship, has been accepted by Lieberman administration and staff as well as by residents and their families on Gregory's and other floors.
People will ask about our relationship and I will proudly tell them Gregory is my life partner, my significant other, my boyfriend for over forty years now. Usually they gasp in amazement and say something like, "Most marriages don't last that long."
If the person is not aware, I will not go into any detail. If the person asks what I mean, I will go into my "gay" or "married" etc description.
I am tickled when people, family of residents or residents, ask if Gregory is my son or if I am his son.
Many people, both staff and family, have commented on how lucky Gregory is to have me and I will reply, "I am lucky to have him."
People will comment on what a wonderful love we have for each other, several have mentioned never having seen such a great love, and others have said they only wish they will love someone as much in their life.
When I hear this, my first feeling is one of embarrassment due to the attention and the visibility of our love, on the other hand I work at not holding back on the love when with Gregory, so the next feeling is one of confirmation.
I guess I just love this man and am a little amazed when others are amazed. It is what we do. It is who we are. That's all. But I guess that's a lot!
Monday, December 15, 2014
OT=Occupational Therapy=a form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life.
PT=Physical Therapy=the treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery.
So generally speaking, OT has to do with getting back life skills and PT has to do with helping injury or discomfort.
I have noticed that whenever Gregory is "off" as in not feeling well, having a cold or flu, having his meds out of balance, having emotional highs or lows ... his neck is the first to go. It lists to the right with chin to chest and looks very uncomfortable and painful.
When you try to help him move his head back to "normal" he winces and/or "ouches." So both Manny and I give Gregory lots of back rubs and use pillows to help support his head when watching TV or eating or whatever.
I made this a priority because I know that good posture has always been important to Gregory and having back/neck problems myself, I know how painful having your body out of alignment can be.
Medicare has strict guidelines for when they will pay for OT/PT and only for a certain amount of time and if the patient shows continued improvement. Gregory has had several sessions since last January which eventually expired for one reason or another.
Periodically I approach the head nurse and ask her to ask for a re-evaluation by the OT/PT staff to see if therapy would be right again for Gregory and if he again meets Medicare requirements.
A few weeks ago, he once again qualified and after three sessions a week, his neck has been looking much better.
Following are a few videos that Manny took with his iPhone (a gift from Gregory and me) of today's treatment. You can see how comfortable and relaxed Gregory gets during these treatments.
His therapist, Pam, is quite wonderful and Gregory has come to trust her with electro stimulation, massage, and using special support tapes on his neck.
Sunday, December 14, 2014
Thursday, December 11, 2014
The Special Luncheon takes place in the first floor area called "The Nosh" which is just off the main Great Room, Living Room, Library.
The special treatment, quiet atmosphere away from the floor's dining room, and the delicious food (Lieberman's food is usually delicious) made for a lovely afternoon treat.
We had chicken soup with kreplach, corned beef in a horseradish sauce, oven roasted red potatoes, and grilled vegetables with chocolate cream pie for dessert. We had a great time!
Saturday, December 6, 2014
I love you Michael Horvich.