The First Long Goodbye
Chapter 1
Living with someone with dementia is often referred to as the long goodbye because the devasting effects of the disease slowly but surely eat away at the person’s ability to have a normal life as they lose their memory and much of their motor skills and often end up not knowing their closest family and friends! It is a devasting disease with at the moment no cure! When you find yourself on this path it is easy to become depressed and angry at the helplessness you feel.
I am currently on this path for the second time in my life and would like to share my stories with you in the hopes that maybe something I have learned while navigating this awful path might be helpful to you and ease your path even if only slightly! First know you are not alone and reaching out to others that are either currently on the journey or have completed it is something I would definitely encourage you to do!
Go online to Alzheimer’s Foundation of America to find services and suggestions to ease your journey! Don’t try to do this alone! It can literally kill you!
My first experience with dementia
My first experience with dementia occurred when my mother-in-law was diagnosed with mild cognitive impairment (this diagnosis is usually how the journey begins) when she was in her mid-sixties. She was a retired elementary teacher who had been widowed at 28 when her husband died of lymphoma leaving her with 3 young children to raise on her own. She had a 6 year old daughter and two sons, one four and the other two. She was a remarkably strong woman who accepted her fate and went on to raise three successful adults.
She retired from teaching at 55 in the Bay Area and within two months had sold her house and moved to Citrus Heights to be close to her daughter, my wife, who was pregnant with her first grandchild. Truly this series of events in her life probably contributed to the rapid decline in her mental health because she abruptly gave up her purpose in life (teaching) and moved away from all of her friends to an area where she knew no one other than me and her daughter.
She joined a women’s club to try to make friends but the women were all substantially older than she and many were within a short time of their deaths. It became a place of darkness rather than the light she was hoping for! She took a job volunteering at the school my wife and I taught at as the newspaper advisor but that merely cemented her identity as her daughter’s mom rather than as her own person! She tried teaching at a local private school but when grades came out she was informed that the grades she assigned were too low after all these parents were paying a lot of money to have their children enrolled there and they would not be happy seeing such low marks.
Unable to convince the administration of the justification for her grades she decided to resign which again added to her feeling of isolation and she became more and more depressed and eventually began exhibiting signs of mental deterioration which led to the diagnosis of mild cognitive impairment!
With the diagnosis in hand my wife and I knew something needed to be done to deal with her condition. At this point she was living in her house with her unmarried youngest son. Her older son was teaching in Ceres and was married with two young children. As my wife had always told me this brother had basically been the man of the house since he was four when their dad died so he was used to having his own way with things and had pretty much ignored my wife and his brother’s opinions and run roughshod over them his entire life.
We were living only blocks away from my wife’s mom with our two young sons and my wife being the oldest and the girl stepped up to try to help her mother deal with her situation with my complete support! At first her mom remained in the house with the younger son but before long it became apparent she was going to have to be placed in a facility where she could get the help she needed on a daily basis. Neither we nor the older son could take her in with our own family dynamics. So now the problem became where was she going to live and how were we going to pay for it! These problems became the source of heated discussions and led to intense sibling animosity!
Decisions our family faced
It is at this point in the story that I would like to interject what I feel is important information for anyone involved in a similar family dynamic as ours where there are multiple siblings with diverse values and opinions. If you suspect that a parent or some other loved one is beginning to show signs of dementia and they have not already signed a power of attorney for health care and one for finances where they have designated who will ultimately make decisions for them if they are incapacitated, MAKE SURE THEY DO SO BEFORE THEY ARE NO LONGER ABLE TO DO SO! In fact you should make sure you and every member of your family has completed such documents while you are of sound mind! To not do so complicates matters when the need arises for someone to take charge!
So from the previous paragraph you can rightly surmise that my mother-in-law had not completed the documents assigning responsibility to someone to make decisions for her once she became unable to do so herself! So because she had not done this a power struggle between the older son and my wife ensued about where mom would be placed and how it would be paid for. The son wanted to spend down all her assets (she had money and a fully paid off house) and have the county responsible for her care.
My wife and I strenuously objected to this strategy for two reasons. First because she could afford to pay for herself at least for a while and second because we didn’t think it was fair to hide her money and make taxpayers foot the bill for care she could afford! Besides which if we went that route then it would severely limit the choice of facilities she would be eligible for and we would not be totally in control of that choice!
My mother-in-law’s failure to prepare in advance forced my wife to apply to the court for conservatorship in order to be able to make the choices over her brother’s objections!
A second aside here is that YOU WANT TO AVOID HAVING TO GET A COURT APPOINTED CONSERVATORSHIP IF YOU CAN POSSIBLY DO SO! Once my wife obtained the power to make decisions for her mom she was then under the supervision of a court appointed elder care attorney! This meant that every cent we spent needed to be accounted for and a report needed to be filed annually of those expenses! The record keeping was burdensome and could have been completely avoided had the Power of Attorney documents been filed when my mother-in-law was fully functional! Becoming her mother’s court appointed conservator caused an irreparable split between my wife and her brother that caused us to be banned from visiting with him as he lay dying from cancer a few years later. It hurt my wife badly!
The weekly drives
So back to the journey! Before my wife had the power to make decisions her brother took their mother and put her in a facility in Modesto near him where his wife worked as a hairdresser. She was placed in a locked wing unable to be outside without being accompanied. Placing her in Modesto an hour and a half from where we lived necessitated us driving to visit her with our two young sons as often as we could. We would pack up after Sunday mass and make the drive weekly to see her and take her out for ice cream. We saw her more than the brother’s family in Modesto.
After a couple years of the weekly drives we decided to move her back to Fair Oaks to a facility within a block of our house so we could see her daily which we did one Sunday afternoon without consulting the brother. Again more family pain! She remained in that facility for several years and while there twice fell and broke a hip. The second time was truly the beginning of the end! One of the caregivers in the facility had a family and we convinced her to move into my mother-in-law’s house rent free and take care of her in her home.
It was a good situation for everyone. The three children treated my wife’s mom as a grandmother and all five members of the family showered her with love as long as she lived! This was at least a small silver lining in the journey! Watching someone waste away is tough and the decisions you have to make for them are at times excruciating! At the end of her life my wife’s mom was on a feeding tube and was basically bedridden with no quality of life!
Finally with hospice involved it was determined that the feeding was not beneficial and that the food was not being digested and that the time had come to stop the feeding and allow nature to take its course! Making that decision was at the time the hardest decision we ever had to make but we did! It took twenty-three long tortuous days for the end to finally come! The long goodbye ended and the grieving began! For everyone involved there was relief and sadness and for my wife and me a feeling of guilt questioning every decision we had made!
In the end you do the best you can with the facts you have and you treasure all the golden moments you had with your loved one! Each person’s journey will be different but sharing it with people you love and who care about you can soften the pain! Not everyone in your circle can handle walking this journey with you but those who can you need to let in and lean on them as much as they will allow! You can’t do this alone and you should not try to!
The pain and the grief will at times overwhelm you but know you are not alone! Reach out to groups that are out there of people traveling this same journey who are at different stages of it and who can give you support and advice to help you through it! We never took this step and basically tried to figure it out and cope alone! All of us on the journey want to help others as best we can so let us!!
If you have any questions or comments for me I will be happy to enter a dialogue with you and give you all the support I can!
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