My grandmother was diagnosed with Alzheimer’s in the early 1980’s.  There was no support groups, there was no information about Alzheimer’s research, there was nothing.  My mother just had to go-figure.

What needs to be established is the Advanced Health Directive and the Power of Attorney. If that is unknown at the time of lucidity, when the time comes for deterioration, it will be a painfully long process…  Also, if hospice care is desired, make sure you KNOW the loved one’s preferences.

My grandmother had to be placed in nursing care.  She had bothered the other clients with her delusions and hallucinations in the "board and care".  It was too difficult for my mother to take care of her, although she could have done a wonderful job, she was working, and had two young children to care for, as well as her husband that was working hard himself. So, my mother came to the heart-wrenching conclusion to place into nursing care, then be placed as a "ward of the state" since my grandmother had no "qualified retirement income" due to her impoverished state…

Before she passed, she was catatonic.  There was a "no code", the hospital broke the "code", thereby prolonging her pain…  When she passed, while extremely heart-breaking, we knew that she was not in pain anymore and she had a peaceful appearance on her face…

You just have to know prior and the telltale signs to Alzheimer’s Disease.

Dr. G-

I felt blessed a few years ago to be allowed to sit with my best friends, aunt’s mother n law that had Alzheimer’s. The family didn’t see much point in it, but allowed me to visit her.

While sitting with her, I asked to be shown where she was. I saw a club that looked like it was out of the thirties. White table linens, a band and she was there with two other women having the time of her life in a very young age of living. I watched for quite awhile, and then relayed to the family where I was taken.

They validated the club, her friends and that time of her life. Not too long after those young years, she married a man who pretty much wiped joy from her life. But from the experience, I really do feel that these individuals are wide awake, in another space. Maybe a place of peace they had in life, and become more of that space then where we are.

My grandfather was very alert, until my grandmother died and within months went to a part of his life with her, when thier children were young. Everyone he saw he would address by names of that time, the consciousness can become very alert while seeming to sleep in our perception.

I currently live with and care for my mother who I adoringly call QM (Queen Mum). She suffeers from COPD and severe Essential Tremors (Familial Tremors). I am fortunate that she only suffers from normal memory dysfunction at age 79. What this means is that she still has her wits about her and the spunk to argue with me if I question her. It makes for an interesting household of two disabled women and an aging female mini doxie. QM’s maiden name was ‘Wright,’ and it’s hard as the very devil to co-exist with someone who has been ‘Wright’ from birth. ;-) CA

My grandmother, mother and now my mother-in-law are dealing with or have dealt with dementia (Alzheimer disease).  If I could offer any advice it would be to get yourself support!  After the fights over all three (with what to do and how to help them.) those of us who dealt with them were emotionally drained and needed support ourselves.  So find an advocate, whether it be a lawyer, or one from the Alzheimer’s Association and above all take time for you!!!  Rest and relaxation for the caregiver helps save a person from an emotional breakdown.

Oh, yea!  It’s crazy here with tulips and great weather for them too!  Getting around can be hard…but that’s okay ‘cause it is great to see the economy being "stimulated!"

And we lived through the dementia/Alzheimer’s disease with two, and my husband’s mom is really a rather happy memory loss person!  She’s in a good facility now and we are all breathing a sigh of relief!  I’m thankful that with my husband’s mom that we found help rather quickly and I had someone to work with in getting her help!!!

Yes, I cared for my mom for 7 years after diagnosis. She had been living with us since my dad’s death for 5 years before that. The real hit of reality with the diagnosis was while visitng her geriatrician, he had her draw an analog clock ( face clock). She couldn’t do it- prior to that we just kept making adjustments in our living situation without really facing the issue. Mom looked at me at that point and said, "when you get to the point where you’re losing your quality of life, you have permission to place me in a facility. I want you to." Eight years later, conditions got to that point, and it was the hardest thing to do, but afterward it became a blessing. I began to enjoy Mom again because I visited her everyday and didn’t have to deal with the other issues that really take it’s toll physcially and emotionally. It’s been 5 more years since she’s been in a wonderful facility..very end stages now, but I still go almost daily knowing she can still sense my touch, my love.  Advice for someone would be do not see a nursing facility as a bad thing. The person with Alzheimer’s would not want you to lose your quality of life caring for them. Seek out a good facility ( family owned are better than corporate owned— not just a job with employees but genuine commitment), check with medicare.gov  site for quality, and although hard at first, you will have no regrets or guilt if your loved one is well cared for.

I am living with that issue right now as I care for my father-in-law. He is at the stage where you can’t turn your back because you never know what he will do next. He turns on the stove burners, the coffee maker with nothing in it and props the refrigerator door open. Last year we had to start frisking him for matches and lighters after going out because he began lighting toilet paper in the bathroom, When asked why he said that he didn’t know why he was doing it.

At lease once a week we have to snake the toilet for inappropriate objects that he has flushed. I have become an expert at removing the toilet and replacing the wax rings to reseat it. He leaves water running in the bathroom. Sometimes he forgets that he is supposed to use the bathroom when his bladder is full.

We have had to childproof the house to keep him safe from himself. Like most dementia patients he rarely sleeps more than two hours at a time. We have to have a baby monitor to hear him when he gets up at night. He might wander outside and fall down the deck stairs. When he gets up every light he can reach is turned on.

Last year he locked himself in the car during summer and refused to open the door. A sheriff’s deputy talked him into opening it. He has tantrums where he seems to be almost out of control. Wanting to be home when I had to grocery shop triggered one of them. As I was leaning over to put his walker in the back seat he was enraged because I wasn’t fast enough. He slammed the back door on me and it hit my hipbone at just the right angle to crack the bone.

Some days his conversation can be fairly lucid other days he can remember the past but not what he ate for lunch. When we replaced our vehicle he wrote his relatives telling them that he paid for it. He did not. In fact we have never taken any money from him. When we first brought him home his finances were a mess. He donated to every organization that sent him a pitch in the mail. He had just about spent himself into bankruptcy.

Caring for him has been exhausting. Early this year we talked to a social worker and our area Council on Aging to see what other options we might have for his care. At that time I found he was eligible for a state Veteran’s home. I applied immediately. He was just accepted and will be going shortly. I feel some guilt in putting him there but feel we have no choice. My husband has a neuromuscular disease that is progressing. He needs someone who can be there for him.

My Nana was diagnosed with this awful disease.  We watched her wither away.  Her daughter, my Aunt (my father’s sister) took early retirement and ny Nana stayed with her.  I dont think it was the best situation but no one could afford the $5000K a month for a nursing home, plus my Nana never wanted to go into a Nursing Home b/c she was scared she would be forgotten. 

It took almost 5 years for her to go from 130 down to 70 and then pass away.  She didnt know her own children much less her 8 grand daughters.  It broke my heart to see her b/c I could tell she didnt know who I was…Every now and again she would "wake up" and talk about her childhood sweetheart and then slip right back into "her" world. 

My husband told me one night that he prays I dont get this disease b/c he doesnt know if he could stand me not knowing who he is and the Love we have for each other.  We then sat down and watched the movie "The Notebook" and he said that if I start getting the signs then we will sit down together and write out our life story.  I fell in love with him all over again…

For those that are dealing with it in their own homes, I pray for you and your family.  It is a very hard disease to watch someone you love suffer through.

My husband and soulmate died almost four years ago of Alzeimer’s disease, he was only 67 yrs old and we had been together for 17 years.  Words fail me in my discription of the stress and horrors the two of us went through in the last four years of his life.  I sold our business and took care of him until 2 weeks before his death.  I survived only with the comfort and help of the Lord, no other person could help as he would not allow anyone into our home.  I have four grown daughters from my first marriage who wanted to help, but he even tried to strangle one of them.  Yes he went thru all of the stages of aging backwards, from my  dear, sweet husband, lover and friend to my child.  He wandered constantly, thank God for the wonderful people in my small home town who knew of his condition and would call me to let me know where they had seen him so I could go get him.  There was no support system in our area for this horrendous disease, I read many books, I tried to find help thru Hospice but they needed a projected time of death, not available to us and none of the care facilities would take him, even for a few hours because he was volatile.  When he started falling and I couldn’t pick him up, I finally put him in a care facility, he lived only 2 weeks.

My main advise would be, do not wait as long as I did to seek permanent help, the patient does not know the difference no matter how the caretaker feels about "deserting them".  Secondly, treasure the "golden moments", the few moments in time, when they actually are themselves again, as it is fleeting.   Also SO important,… when they are browsing thru time and ask about a dead parent or loved one, NEVER tell them they are gone……when you do they will go thru the grief all over again.  He would ask me where his Dad was, knowing his father liked to fish, from pictures, I would say "he went fishing and will be back soon"  This was all he needed.  His Mother was always at the grocery store, when he would ask, this is a kind way to ease the patients anxiety. 

I am very lucky that I was several years younger than my husband and in good health.  After he passed, I had a complete health exam and with some care, and God’s grace,  I am very well today. 

Thank you for listening

By Sharon James, 5/04/soo9 7:21 AM