Dementia and My Mother

My father had dementia. At times my father did not know who my mother was or that she was ill. He sometimes referred to her as the “man without hair” or sometimes referred to her as two people. My mother had non-Hodgkin’s Lymphoma and had taken treatments that caused her to lose her hair. He did not remember my mother’s name and for the last few years of her life did not say her name. This was ironical since all of my childhood and adult years; I would hear him say her name thousands of times. “Marina, where’s my coffee”, “Marina, get me a glass of water”, or “Marina, have you heard from the kids?” You see my father was totally dependent on my mother to take care of things, always.

My mother was a woman who for fifty-nine years cooked special and delicious meals for my diabetic father. This was a woman who served my father coffee in bed every morning of their married life. I do not know of anyone as selfless as my mother. She was his second “mother”, his partner in business, his love, and his caregiver. How could he forget her name?
My mother would get very frustrated and her feelings would get hurt when he wouldn’t say her name. Can you imagine your spouse forgetting your name after you have devoted a lifetime to their well being? It didn’t make sense to her. It didn’t make sense to me or my siblings.

In his state of dementia, you never knew when he would be in his “zone” or in reality. He always recognized my siblings and me, for which were very thankful. We asked if there was any medication to help his memory but there was only Alzheimer’s medication which was prescribed and he took but it did not help. There was no medication for dementia.

My mother never gave up, even when she saw no improvement in my father’s condition. When I called my mother on the phone, she would ask me to talk to my father. She wanted him to have conversations with people to help stimulate his brain. We did not know at this time that my father was having small strokes that were deteriorating his brain. My mother tried to get him to remember things. Again, we didn’t know at the time that one of the worst things you can do is try to force dementia patients to remember things. She could not take care of my father’s problem which was impossible for her to accept.

My mother had great difficulty coping with my father’s dementia. Sometimes he acted normal and other times he was like a stranger. The ups and downs of dementia is what my mother contended with hourly, daily -- for nearly two years, until her death.

How do you take care of one parent who is dying while taking care of the other who has dementia? Which one needs the most attention? How do you tell your mother to be logical, not to be so emotional when her heart is breaking? What could I have done differently?

Visit http://www.thecaregiversvoice.com/blog/blog/ to read more articles about dementia.

You Have to Take Care of Your Mother Even When it Scares You

I received a phone call that my mother was very sick. Her itching had become more severe, she was oozing liquid from her pores. There also extreme swelling of her arms and feet. She had breast cancer 15 years previous and had nine lymph nodes removed. Was her lymph system not functioning? What was going on within her body?

She was in agony. I was in agony seeing her in that condition. My mother was the matriarch of the family—strong, driven, and always healthy. How could she have gotten to this stage? I could not leave her in the hospital alone.
The nurse arranged for a bed to be brought in for me in her hospital room. It was my turn to take care of my mother. She of course was worried that the bed would not be comfortable for me. I assured her I could sleep anywhere and that I would be fine.

As I lay in the bed next to her, I recalled all the times when I was ill and she was by my side. I recalled how she was by my side when I gave birth to my two sons. I recalled the times she was by my grandparents’ side when they were ill. She had always made herself available to give love and comfort to her family.
Now, here I lay next to this “rock” of our family who was not able to take care of herself. I’m glad I was available to be there for her. Yet, I felt helpless as I saw my mother in such a weakened state and in pain.
I decided in that moment that I would:
Appreciate every day, every hour I would have left with her
Do everything in my power to find a way to make her pain less and make it easier for her once she returned home
Understand what was happening to her physically and accept that she was ill

This would not be the last time my mother would be in the hospital. But it would be the first time I realized the gravity of her condition. And it scared me.

Finding time for you while taking care of ill parent

In order for me to give my mother the care she needed, it was important to take care of myself. It was important for me to have a healthy lifestyle. My mother would want me to take care of myself.

It was important to have some balance in my life. I knew this intellectually, now I just had to buy into it emotionally. It was important for me to have some fun. Whether it was a barbecue with friends, a walk in the park, reading a good book, whatever made me happy. It was easy to be sad, but hard to be happy. I decided it was okay to have a little joy in my life.

I will be speaking on this topic at the "Time for Me" Retreat. Visit http://notimeforme.net for additional information.

My Mother's Death by Jane Meade

I remember very well the day my mother died the 1st time. Yes...that is what I said and I will explain.

I was living in a Detroit suburb. It was the early 80's. I was married with 4 young children. My husband and I were going to be attending a Detroit Lions Football game at the very new Pontiac Silverdome. A neighbor, and good friend (named Chuck) had attended a game there the previous Sunday so I called him for simple directions to the Stadium. Chuck always remembered me by my Maiden Name: Janey Walker.

He gave me the directions; yet, there was something strange about his tone. After I breezily thanked him he said something most unusual. He said: "Listen, I'm really sorry about your Mother."

My mother had been in a Nursing Home for many years. She was older than her years, mainly from mishandling of her illness. She'd had many Nervous Breakdowns back in the 50's and Shock Treatment Therapy was used to treat her. It took its toll on a fine woman who was a talented and loving mother. There were periodic bouts of bizarre behavior and subsequent hospitalizations. Again, it was the 50's and as is often the case with Mental Illness, it wasn't discussed beyond the Family. Years later, she was correctly diagnosed as having Bipolar Disease. When her illness was not distorting her sweet nature, there were many happy family times and loving gestures to fondly remember. Unfortunately, my children were never really able to know that part of my Mother. Though there was not much joy I could bring to her later in her life, I loved her dearly. We are like that about our Mother's.

Chuck had lived in the neighborhood in which I grew up, yet, I think he was unaware of my Mother's illness. When he stated that Sunday that he was "really sorry about my Mother." ....after simply giving me directions to a Football game....it seemed very odd.

I was compelled to ask him " Chuck, what do you mean?"

He hesitated and said "Well..uh.... didn't Sally tell you?" Sally Walker was my brother Bill's widow and was a close friend of Chucks wife.

I said "Chuck, tell me what?"

Silence.

I said "Chuck if there's something wrong, you're an old enough friend that you'd better let me know."

He then said "Well, I hate to be the one to tell you this, but...your Mother died yesterday."

My heart dropped into my stomach. My knees got weak.

Mother had been in so much mental pain and anguish for so many years, with Depression presenting most of the time and truly feeling like she was a bother to the world that my first thought was....finally, she is at Peace.

I thanked Chuck for being a good friend and telling me what I needed to know and got off the phone quickly as action thoughts burst forward...there would be much to do.

I walked into another room to tell my Husband the news. It was clear that I needed to call the Nursing Home right away to find out what had happened. In my emotional state, I unconsciously phoned the number I always used to contact my mother directly. It was the pay phone in the hallway near her room.

The phone rang. Another resident answered. I asked for Mary Alice Walker and the resident said," just a minute, I'll get her."
I stood there in shock, realizing she didn't know of my Mother's death either. I realized I should have called the Nurses Stand....and then, I heard a familiar sound....Shuffle, Shuffle, Shuffle....familiar foot steps coming to the phone...and then...."Hello?" It was my Mother....very much alive.

I made an attempt to have a normal conversation, yet it was a bit odd. I explained that we were on our way to the new Silverdome for a football game. She said good bye...and that was that.

Wow....What had just happened?

I tried to capture my thoughts. They were flying all over the place. Did I feel relief or disbelief, anger or joy, guilt or shame…all or none.

Wait a minute. Why did Chuck’s mistake happen? What was this all about?

Within seconds the phone rang again. It was Chuck, he was mortified about what he'd done. It was Sally's mother that had died. He was at a loss for words. I absolved him of any wrong doing. It was an understandable error.

Needless to say...my relationship with my Mother shifted after that.

The shift was in me...not in her. I'd already lived so many years of bittersweet sadness with regret that I didn't have a mother like everybody else's. I'd known the heavy weight of feeling responsible for my Mothers care, etc. and it's effect on my siblings, two of whom had already died. It's effect on my marriage, my children and my life. There was much to process....yet...it was very freeing. Yes, freeing. I knew her death would happen some day.... yet I'd already experienced all of the feelings associated with it.

My main feeling however, was about how much I loved her. No matter what....I loved her...and I knew she loved me.

I no longer feared the inevitable.

Through this major mistake...a new me was emerging. I let my Mother go both mentally and emotionally. I'd mourned her passing...and I set her free.

I was free to just love and appreciate her for who she was..and she was free to just be. I knew her death would eventually occur whenever it was supposed to happen.

When she died years later from complications of a stroke, I was totally prepared to let her go. Her real passing was slow yet easy and I was able to be very present to the process.

I was not new to death and grieving. My mother was the 4th of our original 7 member family to die.

My father had died in 1965 when I was 19 and a young Bride of only 1 month.

My older brother Bob had died in 1976.
My other older brother Bill had died in 1979.

I had to be the one to give my Mother the news of her son's death on each occasion. One can never forget the impact of seeing that level of pain inflicted on a mother's heart.

I was the youngest of her children. I hated having to be the one to bring her that sad news. As a mother...it made my heart bleed to tell her of her son's death, especially considering her already depressed state. The pain of that loss should never have to be borne.

I had escorted her to Bob's Funeral.

Bill's was too much for her to bear.

Now...years later, I can truly say that all of these experiences have given me a different focus on Life and Death, Motherhood and especially on my relationship with my own dear Mother. I am female. life comes through us. We understand it's fragility. We know how it must be protected, revered and encouraged to be productive, joy filled and satisfying no matter what the circumstances, no matter our age. We must do all that we can to preserve a healthy balance both mentally and physically. Some of us must settle for quality time here on this earth.... not quantity.

I know further that even though my own mother was not able to mother me as I would have preferred, she was still dearly loved. Because of her life path, I am here and I am able to pass on her goodness. I remember most her humble and calm manner along with her acceptance of what is...it was her most endearing quality.

My Mother's deaths...both of them...and the early deaths of my Father and Brothers, served to remind me of the importance of letting the people you love know that you love them. The importance of interacting with others in such a way that if life were to end one would have no regrets.

I think my mother would be proud.

Her illness had inspired me to do all that I can to live a quality filled and balanced life. It has shown me that yes, there are troubles in life, yet there are also many, many good things and they should be appreciated. The most important is to show love and appreciation.

I'm happy to have this opportunity to honor her through this written piece. I thank her for the challenging life she lived that has given me a precious focus for how to live my life.

Oh, and another thing. Chuck is still a friend and his mistake proves the truth of that thought provoking spiritual axiom:

“There are no accidents.”

Visit: www.janewmeade.com; Jane will be speaking at the "Time for Me" Retreat, March 2009, visit http://notimeforme.net for additional information