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Tuesday, December 30, 2014

Setting Goals December 30, 2014

When folks start talking about new year's resolutions, in my head I go "Been there, done that" my life is just the same, year in and year out. What goals do I need to set?

But last night my grandson told me a story that merits a bit of mindfulness--I asked after his other grandparents who are a few years older than I. "They just came back from Hawaii where they have a time share," he reported.
"Great," I answered, "they have a whole group of friends thay bought the time share with many years ago."
"But they went alone this time bcause all of thier friends have died." 
He said it so matter-of-factly. I was surprised. "Isn't that upsetting to you?" I asked.
"You know Grandma, they all smoked and drank and so they got sick and died. My Nana and Pop_Pop don't do those things. They eat right, Pop-Pop doesn't hear very well, but otherwise they're fine. They miss their friends, though."

So I realize it is good to take stock of myself at the end of the year, be mindful of what I do, proud of my accomplishments in order to be able to look forward to a year of the same--
Another year like this
one will suit me just fine.

Saturday, December 20, 2014

Learning to Dance in the Rain December 20, 2014

As the darkest day of the year approaches, as the cold increases even here in sunny Arizona, I find it tempting to curl up with a good book and wait for the storm to pass. 
Emotionally as we caregivers to loved ones who have Alzheimer's disease or other progressive, debilitating diseases watch our husbands, wives or parents decline, we, too, seem to be waiting for the storm to pass. We imagine what our lives will be like once this caregiving is finished, while, at the same time we dread the loss of the loved one we cherish.
I have been waiting for the storm to pass for several years now, ever since my husband's personality changed and he became angry and aggressive and has to live away from the lovely, handicap accessible home we built for him to live out his final years.
What keeps you from moving forward in life? What storm are you waiting to see pass before you move on?

As I see each skill my husband loses, I mourn and I wait. What will he forget next? Will his moments of lucidity return? Will he recognize me when I visit today as he did yesterday? Or will he turn from me and follow a caregiver into another room and sit contentedly among the other television viewers on the couch?

But now I also see that my husband is lovingly cared for in a small intimate environment and that his life is more stable. I also am beginning to see that life is not in waiting for the storm to pass but in learning to dance in the rain.

In the Alzheimer's Association Caregiver Support group I facilitate with my son Steve by my side, we have a cadre of eight members who have attended the group for more than two years. Others come and go as they feel the need, Slowly during this time, bonds have formed between individual members of this group and certainly the comraderie we find in supporting each other has become very important to all of us. We look forward to our twice monthly meetings and this time we did something different.
A man attended our group for a while whose wife has Alzheimer's disease. We suggested avenues of assistance for him; we distributed pamphlets, we shared our experiences. He brought the menus for his pizza parlor and invited us to visit his establishment, two miles from our meeting place. 
Yesterday, seven of us went, after our meeting, for pizza and other delicious Italian foods. He was there, as was his wife, whom he cannot leave alone at home. Although he is waiting for approval from the state to place his wife in a residential facility, we are learning to walk together, in rain or shine.

Sunday, December 14, 2014

Luxury December 15,2014

What is luxury to you? Has the idea of luxury remained constant in your life? Do you still yearn for, or highly value, the things you have acquired over the years?
Do you take for granted what you thought of as a luxury in your childhood or young adulthood?

As a child, I thought luxury would be having my own room, a lovely white-gowned wedding, my own apartment   with my handsome husband, little children running around happily, peace in the world. I took for granted my college education, my ability to live in the dorm away from home, the diversity of people whom I was privileged to meet and to interact with. Luxury in college was a hot plate to prepare my own coffee, a kosher salami hanging from the fire escape sent to me by my grandfather, and most of all my English racer bicycle with a college license plate.

I took for granted the house in the suburbs, I was happy with my hand-me-down car when my husband bought himself a new one and luxury for me became time alone- to read, to think, to sit in the sun at the beach. Not that I didn't also shop for and love my designer handbag, my soft leather gloves and my cashmere sweater. From wishing for peace in the world, I became active in PTA, taught first graders, joined the Women's Political movement, luxury forgotten in the middle of life, rearing teenagers and continuing my education.

Luxury in my 50's became travel to exotic destiinations about which I had studied or read, guarded jealously by saving up my vacation time. My children were grown and on their own, I met my second husband and we enjoyed the freedom to live our lives the way we chose to do so.

Now that all of those goals have been attempted, achieved or discarded, I luxuriate in a sinfully soft bath towel after a shower in my bathroom when it is filled with sunlight. I luxuriate in the beauty of a sunrise as I walk early in the morning, or of a multi-hued sunset as I sip a glass of Prosecco--alone-- on my lovely patio. I observe the crowds pushing and shoving to purchase gifts for the holidays and I rejoice that I am now beyond that. I will devote my energies to working toward helping caregivers of Alzheimer diseased loved ones, to meeting new people who are on my wavelength and to enjoying my children and my grandchildren.


Friday, December 12, 2014

Play Ball! December 12, 2014

It is generally understood that new learning is not part of the dementia spectrm; studies are focussed on retaining memory, not new learning.
It is also commonly understood that people revert to old forms of behaving when they develop dementia.
Actually, we don't know enough about dementia yet to really state anything like that.

My husband's actions and behavior surprise us every day. He still has humor, he still wants things done on his timetable. He certainly still prefers to look at young good-looking women, but his fascination with ball playing is something in which he has not indulged since he was a young boy in Brooklyn playing stick ball in the streets. "The sewers were the bases," he recalled a few years ago."And there weren't so many cars parked on the street as there are now," he added then.

We purchased a playground ball this time as the ones from the dollar store don't bounce straight somehow. My husband will play with anyone; he will throw and catch but he prefers to bounce and catch the ball, sometimes standing and sometimes seated in a chair. But the other day, a few other men joined him in the yard and wanted to play--he would not share his ball.

We try to provide activities that are stimulating, but we never quite know what will work and what increases his agitiation. He is also confused about the decorations in the home for the holidays. He wants to take some of them to his room to put them away. Putting small decorative objects away where they will be safe is something I remember of my spouse. Not being willing to share is new since he developed Alzheimer's disease. I believe that he feels he has lost so much that whatever he does remember, he clings to.

Please be patient with the loved one you care for during this hectic time. Remember to modify the holiday to fit the person with dementia's needs. Remember the good times of the past; those are good feelings. Accept the smiles and the moments of recognition of the present. They will be precious memories for us, although sadly not for our loved one with dementia. Life is bittersweet.

In a nutshell, remember this: caregiving is an art not a science. Attempt to take a lesson from the Navajo who believe that to try for perfection is to try to be God. If there isn't already a visible error in a crafted object the crafter will intentionally introduce one. Don't lose sight of the fact that we are human caregivers trying to help human care receivers. We'll never get everything right. That truth holds all year long but is even more important to remember during this time of year when others can appear to live in an ideal world.

Wednesday, December 3, 2014

Goodbye to the Memory Care Unit December 3, 2014

I return to Ecclesiastes often, especially the part from which the song Turn, Turn, Turn was taken.
"To everything there is a season and a time to every purpose under Heaven."
Cousins Deb and Nate sang and performed the song at our wedding 24 years ago.
This time the purpose was to move my Alzheimer diseased spouse from the safety of his memory care unit to the smaller environment of a group home where he will live among ten people rather than among 22.

This is the third out of home placement for him. The first assisted living facility worked well for a while, while my spouse's self-care skills were still intact. It was hotel resort-like with lovely furniture and several areas for reading or watching television. He was able to enjoy the delicious chef-prepared food and a studio apartment with the privacy he wanted, but which was situated right across from a staff office so he could be monitored for safety. He remained there for a year.

When he needed more hands-on care, my husband moved across the street to a special, brand-new unit which was geared for Alzheimer's and other dementia residents. The staff dressed in red shirts so the residents could identify their helpers. The food was cut for the residents so they could eat indpendently, entertainment was provided in the Day Club where the residents could socialize. All good for the past three years.

But now, my husband no longer recognizes his room, he is distracted by the many people, he wanders around the large space aimlessly and he needs more one to one care than the large unit can provide, so we found a lovely home for him which suits his needs better at this time.

When a loved one needs out of home placement, the caregiver's job is not over. We are continually responsible for the resident's life, to see that his needs are being met well, not merely minimally. Our loved ones deserve the most care and dignity possible and sometimes, that requires a move, even though the change was difficult for me--I was so connected to the staff members, the residents and their families it was hard to say goodbye. Everyone was so loving and caring for us all.

The only constant in life seems to be change--except perhaps from a vending machine!!