WHAT IS IT LIKE TO BE A CAREGIVER?

A NEW EXPERIENCE

March 27, 2015 – I noticed a post on Facebook a while back written by a young friend. In it she told of quitting her job because she was going to be caring for her grandfather whom she dearly loved. Of course, grandma too was in the mix, but it was Papa whose health was failing from a cancer he had been living with for some time. She was joyful as she approached a new path in her early journey into life. She loved her grandparents and looked forward to this dedicated and probably her last gift of love for them.

I posted a note back to her expressing my admiration for the altruistic choice she was making, but at the same time I told her that it would be the most difficult job she would ever have.

She answered saying that she was aware of the demands of her commitment, and that for her she was happy to be of service to this loving man and her grandma whose health was good. While Papa still had all of his faculties I was certain that unless something drastic occurred to change the personality of this dear man, the battle of emotions would be easier for her than if he had Alzheimer’s or some other mind-robbing dementia disease.

CANCER AND ALZHEIMER’S

Whatever the disease if it’s a sentence to death it will be heart-wrenching to the family. The big difference between cancer and dementia diseases is that with cancer the patient is still in touch with his or her loved ones. There is communication and reason, more often than not, particularly in the last stages of Alzheimer’s the victim is often without communication with family. Or his/her sentences are broken or garbled. The victim’s understanding is often so dimmed he/she doesn’t know what’s going on in the room around him.

VERBAL AND PHYSICAL ABUSE

That lack of understanding, communication and reason often puts the caregiver in a precarious position where insult and injury may be part of the day’s events.

For a time when I was unable to help the male caregiver with my husband so my granddaughter, took my place helping to get Ken up and ready for the day. There were many times when Kristina went off to her room crying a little or a lot after her grandfather had managed to punch or slap her. At that point in his illness he was beyond knowing that he was not well.

When I was able to return as helper there were numerous days when I too wanted to go to my room and cry because of being injured by this man whom I have lived with and loved most of my adult life. I have suffered attempted bites, been pushed, shoved, slapped, punched, clawed, kicked, cursed at, and spit upon. My male caregivers have experienced the same. It’s not only physically exhausting, but emotionally draining.

You cry into the pillows and in the shower and strive not to break down for the patient to see. He or she has their own inner turmoil with which to cope. Yet the caregiver usually survives, but not without some bruises both physical and emotional

THE END IS OFTEN CLOSER THAN WE THINK

My young friend’s precious Papa lived only a few months under her devoted care until he passed on from the natural causes of cancer, as did Ken last October from natural causes complicated by Alzheimer’s.

I am certain that my young friend and I have grown from our individual experiences. So what’s it like to be a caregiver? I will always carry with me the same definition. “It’s the most difficult job in the entire world.”

DEATH WITH ALZHEIMER’S — part II

DEATH WITH ALZHEIMER’S – PART II

OFFICIAL NUMBERS CAN BE QUESTIONABLE

March 23, 2015 – I challenge the official CDC count of people dying from Alzheimer’s disease because the death certificates of four family members did not list Alzheimer’s as the cause of death, and according to the the doctor who signed the death certificate, it wasn’t. It was due to complications resulting from having Alzheimer’s. However when opportunity was there on the certificate under “significant conditions contributing to death” the word NONE was listed. Had Alzheimer’s not been present, these family members would not have died at that given time.

SENTENCE TO DEATH

We, the loved ones, the caregivers of the stricken understand that with diagnosis AD is like any other death sentence. So why isn’t it listed as a contributing factor? Our patient will never recover. What he or she has is eventually terminal. If not from the disease itself, but from complications that will arise no matter how good the care. As of now, this year, the medical community and for all the research taking place, there is no cure for this disease and many others under the dementia umbrella. We have been told that AD is epidemic in the United States and quickly rising in Western society. With all of the world-wide research taking place there are still no medications to cure or delay the ravages of AD for more than a short while. A disease that literally kills the brain and it isn’t even listed as a contributing factor on the death certificates of all our family members who have passed on with Alzheimer’s.

BEFORE DIAGNOSIS

It seems that just about everyone I speak with whose loved one or friend has passed on with AD said that evidence was visible long before the neurologist made his first examination. For example: my sister’s husband Douglas was suffering from throat cancer and was in pain more than he wasn’t. Yet, he was a trooper. With my sister Janet the two had come for a few days’ visit. Douglas felt very cold and even though our house was about 68 degrees he asked if Ken would kick up the thermostat a bit. Ken complied but grumbled for all to hear about not understanding how any one could possibly be cold and that he felt just fine.

It wasn’t like Ken to be so self-centered and rude, nor to challenge someone’s comfort. He lacked understanding, concern and sympathy for his brother-in-law. That was an early change in Ken’s personality who was best known for his easy-going manner and concern for others. I also noticed that he became lost in traffic very easily and confused with directions in going from home to point “B”. A trip to the hardware store needed an exact note in detail or he would come back empty-handed. Facts became other people’s opinions in his mind and he would challenge what others said. He stopped trusting me accusing me of mistakes he was making or imagined. Suddenly I was the one without common sense and he knew everything. Furthermore, he no longer felt that I was capable of doing anything right nor did he want me drive “his” car.

Like the far-off whistle of a train, we, who loved Ken best, knew that Alzheimer’s disease was coming long before it arrived through official diagnosis from a neurologist.

Alzheimer’s disease gobbled up all the sections of Ken’s brain, but according to the nit-pickers, it wasn’t the cause of his death. For me though, and our family, my husband and the father of our grown children died from Alzheimer’s – the innocent, nameless killer.

CAUSE OF DEATH? ALZHEIMER’S!

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WHAT DO YOU CALL THE CAUSE OF DEATH OF SOMEONE WITH ALZHEIMER’S?

Synonyms of Alzheimer's and the disease spelled out.

The cause of death for someone with Alzheimer’s is often not listed as such.

February 27, 2015 – I know, that’s a misnomer. I know that AD is seldom listed on a death certificate as the cause of death. Complications from Alzheimer’s aren’t listed either. I am using these vague words because people who die after years of suffering from AD are listed as passing on for other reasons. Therefore, in my humble opinion, this terrible disease that is so devastating to so many doesn’t get the correct count as cause of death with the statistics listed by the CDC (Center for Disease Control). How can they possibly keep an accurate count of those afflicted with Alzheimer’s disease if it isn’t even listed as a contributing factor on the death certificate? Continue reading

CAREGIVING AND OUTSIDE HELP

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Woman doing dishing by hand.

A kitchen is never big enough for two women.

A KITCHEN IS NEVER BIG ENOUGH FOR TWO WOMEN

February 20, 2015 – Often when there s a need for assistance in caring for a loved one  family members need to  turn to outside help; remembering always that this means an adjustment for all concerned. My mother used to say that no one could ever build a kitchen big enough for two women. She then related a family story about her sister.

Mama’s brother-in-law and a good friend agreed to manage a piece of farm land in the Sacramento Valley of California for one of their former employers. Everything was provided in the way of farm equipment, tools and supplies. All the men had to do was make it work. The glitch in the whole agreement was that there was a large 10 room Victorian house with a full basement that would house the two families. To meet personal expenses a generous monthly salary was also provided. Continue reading

SEXY FOOD AND VALENTINE’S DAY

Candle light and entwined hearts

A romantic dinner is much more in keeping with Valentine’s Day tradition than sexy food. (Image Creative Commons)

A WORD IS A WORD – SEXY

February 13,14,2015 – I watched a Valentine’s Day TV show the other day about sexy food. The participants were either chefs or invited good cooks. They all prepared so-called sexy dishes as a suggestion to the viewers for what might be served on day 14 of this month to anyone’s special person. Personally, I’ve never encountered sexy food, but I’ve often heard of certain foods being an aphrodisiac, such as lobster drizzled with butter or oysters on the half shell. I’ve eaten both, but found no special yearnings for either me or Ken to get a room following consumption. Continue reading

A FAMILY DISEASE: ALZHEIMER’S

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Those with Alzheimer’s often h aave dull eyes. They have lost their sparkle. Image courtesy of Cretive Commons.

THE EYES HAVE IT

February 6, 2015 – Who in the family gets Alzheimer’s disease and who doesn”t The eyes, it has been said, are the windows to the soul. They are also the windows to illness. “Do I have sick eyes?” my little one used to ask when I told her that I knew she wasn’t feeling well because I could see it in her eyes. A  fever and a cough or other youthful maladies could keep my children home from school, but the first tell-tale sign was often their glassy eyes. When they started feeling better those eyes were usually back to normal and it was time to go back to school. Continue reading

REINVENTING YOURSELF AFTER ALZHEIMERS

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WHERE DO I BEGIN?

home during improvement

Improving my home is one of the ways I am reinventing myself after Alzheimer’s.

January 30, 2015 – Reinventing yourself is a lifetime challenge and often occurs after a major life change. When Ken was with me it was much easier to make changes in our home and  our lives. We could meld our ideas which we did. Then when he was out of town, I would began. For one whole week during the summer of ’96, Ken was away at Girl’s Camp volunteering for security duty as well as a highly experienced guide for an overnight backpacking trip. I jam-packed each of the seven days with projects that I just knew would merit his approval. Not only approve, but he would be surprised and so pleased with the outcome. Of that I was certain because he was always pleased with what I did. Continue reading

A DIFFERENT KIND OF ANNIVERSARY

hands touching

After the death of my husband from Alzheimer’s, celebrating what would have been my 65th anniversary had its challenges.

January 21, 2015 – Today is mine and Ken’s 65th wedding anniversary. I usually think of our years together as more than 50. 65 is considerably more than 50, but I’ve known of others who have reached higher numbers in their pledge to one another. That’s a wonderful thing.

DEVOTION PLUS – SOMETIMES

Marriages that last until one of the partners passes on are apparently rare. What is the national average now? One in three fails in divorce, and stats tell us that with a second or third marriage, divorce is even more at risk. I don’t profess to know what makes committed partners split. I’m sure it can be any number of things. What I do know is that in my immediate family the stats aren’t even one of our three. It’s more like three out of five, but I know the reasons are as different as the people involved. I’m just very glad that Ken and I were able to support them in whatever decisions they made. But more, I’m happy that the two of us made it to the end. Continue reading

MOURNING THE DEATH OF A SPOUSE

DEPRESSION

Mabel Ann & Kenneth Romick at the beginning of Alzheimer's onset.

Mabel Ann & Kenneth Romick at the beginning of Alzheimer’s onset.

When a spouse, or any loved one  dies,  there should be time for mourning. After all an important person is gone from your life. Whether it be a parent, a child, a dear friend or a spouse you have to adjust to that person being absent from your entire life. For as long as you live they are gone. In and of itself, it gives you the right for extreme sadness. Sadness expressed in whatever manner you reflect or choose.

Unfortunately, depression often comes as a part of mourning. As a major component of the mourning process, it needs to be fought with all of the emotional forces you can muster, controlled and put aside as soon as possible. It can manifest itself in many ways other than sadness: Lack of sleep or sleeping too much is a sign of depression as well as losing your ambition or interest in doing much of anything. Of course, feeling sad is a natural emotion with a loss as great as death. But depression shouldn’t be allowed to remain and alter your everyday life. Your doctor can help. Medication for a short term can be helpful and is permissible. So is professional counseling. Continue reading

HOLIDAY CHANGES 2015

To-do list in a notebook

Photo courtsey Creative Commons
My to-do list has dramatically changed this holiday season.

January 10, 2015 – Many people write a holiday letter telling all about life and their past year. Expounding on accomplishments, not only by the family, but an update on the mailman, the neighbors, the pets and so on and on. Just kidding here. The big change that came into my life this year was Ken’s passing.  It turned my life upside down. I started living in a more laid-back kind way, letting go of many of the things I thought I had to do.  These are some things I haven’t done, becaue everything is no longer as important as it was when he was alive and before AD took him away.

THINGS I DIDN’T GET DONE FOR THE CHRISTMAS HOLIDAY

1. My Christmas cards are still in their boxes. They won’t be ready to mail until around December of this year, 2015. Meanwhile instead of resolutions I’ve decided to reinvent myself. I read a bit of Wayne Dyer on the internet and he advised against resolutions. Instead he advised change, and not a commitment to change overnight, but to begin on a change taking small steps. You can do anything for five minutes. So if you are going to work out. Do it, but start a little at a time. Yes. Five minutes is a good goal and one that just about anybody can do. Who can fail in five minutes? Then when you do the five minutes you can extend your time. Be a success with your changes to a better you by establishing attainable and realistic goals.

2. So, back to Christmas cards. My friend Jane in Idaho is always the first card to be received. If I mailed mine now, January, then I would be the first in 2015 to get my cards out. Instead be ready for new news when this year’s Season arrives again – any time after Halloween.

3. I didn’t wrap many of my Christmas gifts. The ones that got wrapped granddaughter Kristina did for me. I did manage to stuff grandson’s new socks in a Costco pharmacy bag and stapled it shut. At least he had to work a little getting it open, so it was almost like a wrapped gift.  

4. I didn’t wrap daughter-in-law Sabina’s gift either, and lost track of where it was, so she got it in a Macy’s bag on the morning of December 26.  I’m not getting forgetful I’m just taking life easy.

5. I didn’t put up the Christmas tree for a few reasons. The first was because I didn’t feel up to getting everything down and up and then down again, then back up in the rafters. Even though Ken could see the tree in previous years, it was meaningless. With his Alzheimer’s he has long since forgotten all about celebrations. His last comment when seeing the tree decorated with lights twinkling was, “Pretty, what’s it for?”

The second reason is because Buddy, the new dog gets tangled up with the computer wires under my desk. I didn’t want to have him take down the tree if he did the same thing with the decorations, lights and garland.

6. I didn’t have any of the men put up the outside lights either. That decision was part of taking down everything from the garage then putting it all back. Because I didn’t put up the tree or other decorations, I didn’t have to do anything on New Year’s Day. That was always the day I used to take it all down while Ken watched all of the New Year’s Day football games. January 1st was his day and that’s what he always chose to do.

THINGS I DID THIS SEASON

1. I said goodbye to my dear husband of nearly 65 years and have just about finished with the thank you notes for those who participated in his service and for the other help I received during this difficult time for our family        

2. I made cookies which had been Ken’s job during those years without AD. He baked, I boxed and he delivered, but if the baking and boxing was completed, I went with him to give our love and holiday greeting to everyone on our list. I delivered by myself this year. That’s all right. Ken’s tradition of good will goes on

3. I took a box to my cousin Pat whose health has reached a point in her life where living in a care facility is best for all concerned. I also take my abundance of used magazines for her to share with the other residents.

4. I visited with another friend at a different care facility. She is also a victim of AD, but she still knows who I am and reaches out for a hug when I come in. Unable to eat sweets because of her diabetes I took her a tiny artificial plant.

5, I said, “Yes,” to Kristinia when she brought a tiny puppy home that she found abandoned with his three sisters in the bushes outside of her friend’s house the evening her grandfather passed. We named him Buddy – Ken’s nickname as a little boy. 10 weeks later he’s up from tiny to 25 pounds. Three of her friends took the female pups.

MY CHRISTMAS CARD LIST GROWS SHORTER EACH YEAR

I suppose it has to do with the cycle of life. I notice that many of my friends are passing on, and as a woman of faith I know they are passing on to something better. But while we are here, we have a most important calling: That is to care for one another. As we do this we can resolve that during the coming year we will all do our best in seeing that we extend ourselves to caring and helping one another. And while we’re thinking of the new year, may your troubles be small and your joy large as we continue through these happy holidays into another chapter of our lives.

GOALS FOR THE NEW YEAR

May I leave with you a scripture from Matthew 25:35-40  For I was hungered and ye gave me meat. I was thirsty and ye gave me drink.  I was a stranger and ye took me in. Naked and ye clothed me, I was sick and ye visited me. I was in prison and ye came unto me. Then shall the righteous answer him saying, Lord, when saw we thee hungered and fed thee? or thirsty and gave thee drink? When saw we thee a stranger and took thee in? or naked? and clothed thee? Or when saw we thee sick, or in prison , and came unto thee?                                                 

And the King shall answer and say unto them. Verily I say unto you. Inasmuch as ye have done it unto one of the least of these my brethren, you have done it unto me.

 

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