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Friday, November 29, 2013

Validation Therapy--We use it daily. Why is it a negative with Dementia sufferers? November 29, 2013

Validation Therapy and Dementia: Pros and Cons

Dementia is a decline in memory and/or intellectual functioning severe enough to interfere with social or occupational functioning. Dementia is not a disease itself, but group of symptoms. It is characterized as a progressive decline in cognitive function due to damage or disease (such as Alzheimer’s) in the brain. Areas particularly affected include: memory, attention, judgment, language and problem solving.

Dementia is condition in which a person loses the ability to think, remember, learn, make decisions and solve problems. Symptoms may also include personality changes and emotional problems. Personality does not change with age in the absence of mental disease.

There are many causes of dementia, including Alzheimer’s disease, brain cancer, and brain injury. Some Parkinson’s patients experience dementia at later stages of disease The idea behind validation therapy is to “validate” or accept the values, beliefs and “reality” of the person suffering from dementia. The key is to “agree” with them, but to also use conversation to get them to do something else without them realizing they are actually being redirected. So, if an 87 year old woman says that she needs a phone to call her grandmother, validation therapy says, “OK.” Here is an example for a caregiver working with someone with dementia in an adult day care:

Older adult: “I have to find my car keys.”
Caregiver: “Your car keys…” ( Don’t mention he doesn’t have a car and he hasn’t driven for years)
Older adult: “Yes, I need to go home – lot’s of work to do!”
Caregiver: “You are busy today?” (Don’t mention he is at adult day care and isn’t going home for hours)
Older adult: “Hell, yes! I’m busy every day.”
Caregiver: “You like being busy?” (Trying to find a topic of conversation that they might accept discussing)
Older adult: “Are your kidding? I didn’t say I LIKED it. I just have to work  like the rest of the world.” (He’s getting a little frustrated, but seems to have forgotten about the keys.)
Caregiver: “I know about work. I do some of that myself. In fact, I’m getting ready to fix some food for us. Care to join me?”
Older adult: “Sure, I can eat.”

I am quoting this description of validation therapy to counter the negative of "lying" to a person suffering from dementia. 

Just yesterday I witnessed the folowing conversation at the memory care center.

Resident: My closet door is locked.

Worker: Your closet door is locked? Do you feel cold?

Resident: I am always cold.

Worker: Let's walk over to this comfy chair and I'll get a blanket to tuck you in with and keep you warm.

Both walked off without any more reference to the closet door which must remain loacked so she doesn't repeatedly remove her belongings.

Thursday, November 28, 2013

Holidays and Guilt - Do they Necessarily Go Together? November 28, 2013

My fellow spouses of residents at the memory care facility ask each other at each holiday "Are you coming here or are you taking your spouse home for the holiday?"

We sometimes pack up the resident, wheelchair, adult bathroom materials, change of clothing, whatever. Get someone to help assist us in the transfer from home to car, to our home and return. We worry when the resident doesn't understand who all these people are, where he or she is, when they will return to their comfort zone.

Even with mobile residents, it is unusual for the resident who has Alzheimer's disease or other forms of dementia to benefit or appreciate a change of scenery--especially when guests are present and there is a lot of commotion.. Even happy commotion-children open ing presents, for example.

Another difficulty is the food served at home at holiday time. It is usually well spiced and our loved ones are now used to eating more bland food which their sensitive digestive systems can digest more easily. Their diets are geared for their age and conditions- sugar-free and reduced sodium for example. Their food is cooked to a softer consistency that ours, so that it is more easily chewed--or swallowed and digested if it is not chewed well enough. 

My husband, for one , used to love rutabagas, brussel sprouts and creamed onions. He made a wonderful Jello-mold every year and the turkey was always crisp on the outside and juicy on the inside just like the joke he used to tell about the bears and the people-filled igloos.Today at lunchtime he will eat turkey with stuffing, mashed potatoes and gravy, jellied cranberry sauce. He will not recognize any of the foods; he will eat because he will be hungry, not for enjoyment. He may or may not notice that I am there with him, sharing his day before I join my family for dinner.

But we remember his cooking with love for his family, his enjoyment when we relished what he had lovingly prepared. We allow our fond memories to calm us and to help us to see that his comfort is in the quiet routine of his life where he has no anxiety and his needs are well met.

Sunday, November 24, 2013

What do we lose, when we lose the concept of time? November 24, 2013

The first place I look when I awaken is to the clock radio. What time is it? Is it time to wake up or to fall back asleep? Did I sleep in unintentionally? What do I need to do this morning that I missed by sleeping for that extra 30 minutes?

It's Sunday, my morning to spend with 2 cups of coffee and the Sunday NYTimes. After lunch I'll visit my husband at the memory care center before joining my family to watch the NYGiants play football on television. Last week my husband joined us and was able to visit for an hour and a half before he became anxious and wanted to return to the comfort of his home. What willl today bring? I do not know yet.

What I do know is that I took his wrist watch home with me this week, at his request. He no longer has any concept of time and he no longer understood why he was wearing this leather strap on his wrist.
It has been a long time since he has understood the concept of time; his life's rhythm depends on his immediate physical needs. He falls asleep no matter where he is if he feels tired, he asks for food when he feels hungry, he asks to be shown where the toilet is when he needs to relieve himself.

Several of the members of my Alzheimer's support group are grappling with the early stages of the loss of the concept of time. "She asks every day repeatedly if tomorrow is Sunday" one woman complained. Her mother-in-law wants to get her skirt ready for church. Answering that today is Tuesday doesn't help; the cycle of the days of the week is no longer active. When I suggested they get her skirt ready anyway and replace it in her closet while the woman slept, she was appalled that I suggested "lying" to her mother-in-law.

Alzheimer's disease can accentuate anxiety as folks are aware of their losses in one area, but still recognize the importance of ingrained repetitive events. Another woman I know constantly wants to fix dinner for her husband who passed away years ago. She has lost the concept of time, but not the daily routine of the expectation that she prepare the evening meal for her spouse.

So many of us are controlled by time; we feel uncomfortable when our routines are changed. Even Sunday has its own routine for me, but here I am, writing a blog entry instead of reading my Sunday paper. The difference? I can choose my priorities. So can you. We can plan our time, we can manage our anxiety by dividing our time among what we do for others and what we do for ourselves. Take time for yourselves today.

Saturday, November 23, 2013

Thanksgiving 2013 For What or Whom are You Thankful? November 23, 2013

I feel so much like a dinosaur these days and I am grateful for my years, but so many of my allusions do not work  because the younger listener has no point of reference. Commercial jingles I recollect have not been heard, as the one from Ajax where all your troubles  "go down the drain;"  political statements, even from JFK , such as the one that begins "Ask not..." are no longer known. 
I must also remind myself that in  my adult years I have gathered so much information that when I fail to recollect something, it is being retrieved from a very large database in my head. I sometimes wish I could get an update as my iPad can to fix database glitches. Of course you can readily see that I am very impressed with myself at 75, even though I know many people who are knowledgeable and high functioning at ages 10 or 15 years older than I. But that's about it. I am grateful and thankful not only because I spend so much time in the company of formerly bright, articulate people such as my husband whose minds are closed by Alzheimer's disease or other dementias, but also because I see the need to make good use of this time of my life.
The motto "Live for today" never meant very much to me as I was always preparing for tomorrow. "Life is short, eat desert first" is posted on the wall of Bob's favorite Arizona restaurant. Even five years ago, when I first saw that poster, I thought it was a joke, but not anymore. I am beginning to appreciate the sweetness of waking up every day, knowing who I am and what I have planned.
As always, I am thankful for all the people in my life , those who care for my husband in the Memory Care facility, others who enrich me and toward whom I feel connected, whether they have entered my life for a reason, for a season or for a lifetime, whether in person, through sharing my book or through contact with the 859 Facebook friends who read what I post. My journey with my husband through Alzheimer's disease has indeed transformed me in many ways  and I have met so many wonderful, caring people along the way.
Most of all, I appreciate and I am grateful for the closeness I now have with my family ---- my children, grandchildren, my sister in California and her children and grandchildren and several of my cousins. I am thankful for this holiday which encourages all of us to count our blessings and for me to share with you all how very important and how very loved you are.

Wednesday, November 20, 2013

What is Unpredictable about Dementia? November 19, 2013

I have heard two stories this week about families dealing with early onset Alzheimer's disease and the financial problems these folks have before the Affordable Health Care Act kicks in, which will protect them.
In one family, I first met the husband last year when he shared that both he and his wife had recently retired at 62, after 20 years of  teaching, had purchased a small home in an Active Adult community in Arizona and were looking forward to enjoying golfing, tennis, the good weather and perhaps a trip to Hawaii during their retirement. Modest goals, but doable on their budget. Then the wife started forgetting --where she was driving, what she needed to prepare dinner and she began to ask the same questions repeatedly of her husband who began to be afraid to leave her home alone while he played golf nearby. 
So she rode in the golf cart for a while, but became bored rather quickly; she also became demanding, short-tempered and anxious. A visit to the physician sent her for Alzheimer screening and prescriptions for expensive medications which have not improved either her mood or her condition and which tapped into their budget quickly. They were in the "doughnut hole." Their insurance company refused to renew their coverage since they moved from one state to another, claiming a pre existent condition and they were forced into a high risk program which cost them more money than they could afford. He cannot afford in-home care, they had no long term insurance; he sees their hard-earned nest egg draining away. His 87 year-old mother has moved from the mid-west to help care for his wife, but she needs lots of help herself.
The second story involves a younger woman who was born and raised abroad, in Romania, met and married an American working there, moved with him to the States and learned English in her forties, completed college and began working in the healthcare field. Soon she was forgetting to chart, the dosages of medications and lost her job. She paid for expensive genetic testing and found she carries the mutant gene for Alzheimer's. Her sister has recently died from the disease. Her husband is an entrepreneur--which means he works for himself and needs to shop for individual healthcare coverage. When her COBRA coverage expired, he was not eligible for insurance again due to his wife's high risk. He cares for her, reducing his ability to earn a living. They moved back to Romania where she has a senior center where she can spend her time without a $10-12 per hour fee and he has time to work.
LIFE is unpredictable; we must be prepared and we need universal healthcare. 

Wednesday, November 13, 2013

Commanding November 13, 2013

Who likes to be told what to do? Who likes to be ordered around by a demanding, insistent spouse?
I do and of course I'll relate the story:

I arrived early at the memory care enter on Veteran's Day to check that my husband was well groomed for the annual event. He was quiet and complied willingly as I decided he should have clean khakis to wear. We walked together calmly to the Day Club where the service for the veterans was being set up outside by the flagpole. The only spot with a bit of shade was in the last row in the corner where we headed.
As soon as we were seated, another resident and his wife joined us and she is my witness to the conversation that ensued.
Bob: I want to sit up front
Me, surprised: Sorry those empty seats are for the flag bearers.
Bob: Let's get out of here
Me: Soon we'll go feed the ducks in the pond, after the singing.
Bob: Get the car
Me:shocked surprise at  this lucid, clear well articulated demand.

We did sit through the short flag-raising service where my Army veteran husband was given a scroll of appreciation and a small flag in honor of his service to our country as were  56 other residental and day club participants and our director who was handsomely attired in his Air Force Major uniform.

Bob continued to be clear and direct all afternoon, not liking the park "too hot" and saying he's hungry. We went to his favorite fast food restaurant where he ate a whole cheeseburger, french fries and a vanilla milkshake, delightedly. He needed assistance which my son gladly provided; we love to see him eat! Hospice has re-evaluated him and finds him not eligible which is good. There are still events in which he can participate with some joy and he can feel some success in having me do as he wishes.