Precious Moments

As I watch my Dad slowly slipping away, I realize that each moment with him is more precious than the last. Today I spent an hour with him alone and I can still see remains of his humor, his wit and his sweetness. I still see the man that I adore in every fleeting glances. I live with the fear that I will walk in my parents home one day and he will look at me strangely, not realizing that I am his daughter.

I mentioned this to my husband one evening and he said, "I understand what that is like and I am sorry." My husband's father lived with us for ten years as he slowly but steadily loss his memory and gradually died with Alzheimer's. It is such a heartless and cruel disease. Not only does it take your memory, at the same time it takes your loved ones away. You become fearful, alone and scared because you do not know the people around you, where you are or what is happening to you.

What is happening to your body in the beginning is so disabling. My Dad is very weak, stumbles and really needs to be in a wheel chair now. However, neither him nor my mother are ready to face that fact. On Saturday while in our home he slept sitting on the sofa for about three hours. When my mother came to pick him up after working at the church, we could hardly get him up off the sofa. He was dead weight. My mother is a very small woman of approximately 80 pounds. My son had to help us to get Dad to the bathroom. I am very afraid that he will start to fall and pull my mother down with him.

I recently was part of an Alzheimer's panel for caregivers and have conducting many workshops for caregivers. I try to reach out to others in the community and share what I have learned. It is the hardest job in the world to care for someone who is suffering with a terminal disease. Alzheimer's is especially difficult because the patient has many years of being ambulatory and still communication is so difficult.

I am working on a article for caregivers for our local paper for the elderly caregivers. I am also volunteering next month to do art therapy at the Alzheimer Association. I will attach a link to my article here when I get it finished. I also will be writing an article that I hope to get printed on tips for caring for Alzheimer patients. I am trying to get more information out to the medical community because doctors, nurses and health care workers are still struggling with handling patients.

My Dad's brother is in a nursing home setting and his care has been terribly mishandled due to the medical staff ignorance. They have drugged him to suppress his behavior with very powerful meds. This would not be necessary if they understood the disease or were trained in how to handle patients. I have tried to intervene but have found that my involvement at this time in his care is more than I can take on. I love my uncle and he has no children but my parents and his brother are the ones in charge at this time. I can not take on that battle currently which I deeply regret. I just have to deal with my parents and there health problems as I can. We visit them everyday and do what they let us do.

I only hope for more moments with Dad, like I enjoyed today and record those in my memory to last a life time.

Time Is the Enemy

Time is the enemy when your loved one has Alzheimer's disease. You know that with time things will life will be harder, that your loved one will be weaker and there will more of a chance that they will not recognize you.

I have not posted for awhile. Time has not been kind. My dad is getting weaker, sleeps more and repeats more. My mother has appeared to be dealer with his condition better or is accepting it more. I know from my own experience with my father-in-law and the stories that, I hear from other families that life with him is hard. In just the short visit with him, I will hear him repeat questions several times and I see him getting angry with not getting the answer he wants.

On Christmas day, my parents came to our home around 1:00 and he appeared weak but was able to walk with being steady by my son. During the day he got weaker and grew more tired. By the time they left around 6:00 pm he needed two people to help him to the car and my mother reported that she had a terrible time getting him in the house. She is very small and even though my Dad is small, he is dead weight and unable to support himself. I felt badly that we didn't follow them home to help him in the house. I just didn't realize that he was so bad. I know that he won't be able to come to our home next Christmas and may actually be bed fast by then. He is deteriorating rapidly. This is very difficult to face.

Over the last few days, my son, my husband and I have talked about what the next step will be. I think Dad is very close to needing a wheel chair. So we discussed a ramp and where best to place it. My husband said, "there is no way you mother will allow a ramp to be put in". I am not sure what will happen. However, it is unfortunate that he will be incapable to walking very soon.

They go to mall and walk every morning. He uses a walker with wheels at the mall and sits down often. My mother will not allow him to use the walker in the house or take it to visit. She doesn't like to mess with it, so he uses a cane. The condition he was in on Christmas day, I doubt that even a walker would have helped. He practically needed to be carried out.

My opinion is that my mother will just stop taking him anywhere unless he has to go to the doctor...then she will have to ask for help or decide to get a wheel chair. It is very difficult for them both. Dad hates being helpless and Mom hates being the one to do everything. She also hates to ask for help. They have both been very independent.

I see these same scenario with family after family that I work with. The burden falls on the spouse who is healthy and destroys their health or falls on a child to care for one or both of the parents.

I am starting a support group for Alzheimer families and I am also conducting a one day workshop for families and professionals on understanding Alzheimer's on April 3rd. For more information call 316-305-7106 begin_of_the_skype_highlighting 316-305-7106 end_of_the_skype_highlighting. If you do not live in the Wichita area and need help with a family member or if you are a professional who need guidance call me. I would be happy to help with any of your needs.

Why?

I thought I would begin this blog page with asking the question that I believe we all that have touched in someway by Alzheimer's react. "Why?" "Why me?" "Why my mother?" "...my father?"

This time it is my father. The last time it was an Aunt and the time before that it was my father-in-law. Even though I am a mental health professional my first reaction was "Why?" This is a normal response to the a traumatic news. Just as in the grieving process we start with denial. We do not believe this can be happening to us.

After being a full time care-giver for my father-in-law for nearly ten years I ignored what I was seeing. Despite observing the symptoms my father exhibited and being a trained clinician, I did not believe it and wanted to deny the reality of the diagnosis.

My father is in the early/mid range of the disease and he is 83 years old. My mother's sister is 74 years old and she is in the advanced/mid range, I believe. My father-in-law was 84 when he was diagnosed and he suffered for ten years.

"Why" I feel that I need to write this blog, is to give a voice to my own pain as I go through this with my father and hopefully to document for others what affect Alzheimer disease has on the whole family. My pain is difficult as a daughter but I can only guess at the pain my mother and my father feel as they start down this difficult road. Fortunately, despite knowing that hardship, physical toll, the emotional strain and the financial costs that my husband and I suffered with my father-in-law, I am sure they do not have a full grasp as the enormity. Additionally, even though they have seen my Uncles heart breaking journey and the journey of many of their own cohort with Alzheimer, again they have only been observers. However, now it has entered their lives and will not leave until it removes my father's precious memories, mental and physical abilities and tried to rob him of his self respect and dignity.

Over the next months and years, I will share with you my thoughts, research and experiences to hopefully provide a community that let you know that you are not alone. I also hope that as you finished reading this blog you will offer your own ideas, thoughts, experience, advice and questions. Finally, please feel free to read my other blogs, the Reach Family Therapy web site for more information on Alzheimer's, care giving, grief/loss and dying posted there, other links we have on our site at www.reachfamilytherapy.com and the other services we offer as Marriage & Family Therapists.