Dementia Support Group

I would like to have feed back form others about my brutally honest article.
I still take him out to dinner and a movie.

The Avalanche of Dementia

My dream: Our family of four was driving in a beautiful valley surrounded by snow-covered mountains. Bill, my husband, pulled the car up to the very edge of this mountain range. Despite the serenity of our surroundings I immediately sense danger, my heart started pounding. Within seconds the covered mountains released their snow in a horrific avalanche. It was vivid, frightening and all of it crashing down towards our car and close knit family. I looked to Bill to start the car but he couldn’t do it. I reached over and turned the key, the engine started and we were able to drive away. When the car stopped the avalanche missed us by inches. Unfortunately reality was not as kind. An avalanche called dementia hit our loving family, tossing us out of control, pushing us helplessly down a mountain of sadness and despair. The aftermath left us traumatized mentally and physically. Unfortunately, only three of us emerged alive: battered and bruised. It is this illness which brings us to our last night together.
Dinner and a movie. That is what we are doing. First the movie, with the hope of generating a conversation about the movie during the dinner, this was my routine. But tonight was different. It was the last Saturday night this ritual would take place, and I wanted to feel something, but there was nothing. No pain, no sorrow, no poignancy to our last “date”. I assumed it would be painful however I believe I have become numb to this illness, it was no longer possible to feel bad anymore. If I had been in pain would it have been noticeable? Who in the restaurant that night were in pain, would I recognize them? I had never thought to look for it before, never wondered who around me is putting on a face for the world when they really wanted to stay in bed and die. I look for it all of the time now, yet still don’t see them. Heroes, are those who choose to get up everyday and live. I started out feeling very much the hero. But now I am emotionally exhausted, physically tired. At the beginning of this long painful journey I wanted to be a hero, “this a test of character and I will not fail”. I proclaimed those words 6 ½ years ago. But here I am at the end, no longer feeling a hero, no longer feeling as though I had passed the test, instead I have been swept away and smothered.
There were many dark months when I often wanted not to live, to end the pain, I developed plans to end it all. Make it look like an accident so no one would know. I got a on a plane hoping it would crash. The irony was not lost to me because all of my life I was fearful of flying but this day I wanted the plane to crash, to die in a way no one could blame me. The plane didn’t crash and I didn’t carry out my other plans. I couldn’t do it to our children or maybe I never really would have done it but I certainly thought about it, a lot. But I chose life and the daily pain the loss of my husband brought. Here I sat in my favorite Italian restaurant on the last Saturday night of my beloved husband’s freedom. But he was no longer my husband, what remained of him was a body with a severely damaged mind that I am morally and legally responsible for. Many will say he is still my husband and judge me harshly for my description of him at this point. But live the life I have over the past six ½ years, then we can talk. I believe insisting that what remains is still my husband is an affront to who he was, to diminish the memory of who he had been prior to the onset of this terrible illness. Despite recommendations from lawyers to divorce him I chose not to, so his body remains my obligation. He had been a wonderful, honorable and delightful gentleman. The love of my life, I would not divorce him but I also would not allow myself to die along with him, to lose my independence, my right to a certain quality of life any longer. I was placing my demented 62 year old husband in an Assisted Living facility in the morning. His dementia had progressed to the point he could no longer stay home safely by himself. That is the point I determined was enough, enough pain, enough sacrifice, enough of this most horrible of diseases. If he couldn’t stay at home by himself and I did not place him in a facility then my sacrifice, pain, stress and anger would grow exponentially. He would not have wanted that.
It all started when I was 47, he was 57. Our son was 16 and our daughter was 19, away at college. He started acting out of character, doing things which were not “him”. From the beginning I knew I was losing him, even though it took two years and 7 different Neurologists to get him diagnosed. I initially knew whatever was wrong was neurologic in nature and neurologic diseases don’t stop, they kill you. I determined his diagnosis within 6 weeks of his first hospitalization but I never told any of the Neurologist what I thought. I wanted them to come up with the diagnosis, I wanted them to prove to me that they were smart enough to take care of my beloved husband and look for everything, anything else, another diagnosis, I wanted to be wrong. I didn’t tell them because I didn’t want to send them down the wrong path. Unfortunately it took me two years to find one “smart enough”. That is two years of every minute of everyday wondering what was wrong, what else it could be, how could I save him. The stress of these two years cannot be put into words, the incorrect diagnoses again and again. Going down the wrong road only to end up back with the same problems that were progressively worsening. But I was correct, he had a Frontotemporal Dementia, an illness worse than death. Where you die but physically remain and become what no one ever wants to be: a burden. The illness goes on for so long your spouse and children can barely remember what you were like. This illness robbed us of him and any pleasant memories we had. It makes us want him to die, but death does not come for weeks, months and ultimately years after he is already gone. It is a dementia that initially does not affect your memory, so everyone thinks you are doing great because you remember them and past activities. But you are seriously ill. When the “smart neurologist” determined the diagnosis she told Bill “ you still have many productive and wonderful years ahead of you. You will be able to work and drive for several years”. I sat there incredulous, who was she talking about? The man sitting in front of her had serious behavior problems which affected his ability to function. This interaction clearly illustrates the many battles I fought throughout the years about the severity of his illness. To prove my point he was let go from his entry level job 6 weeks after this appointment and I stopped him from driving within 3 months.
The official web site Association Frontotemporal Dementias list symptoms but nowhere do you find the impact of those symptoms on the family. These symptoms come and go without warning. Your family never knows who is going to answer or what you are going to do next.
Here is a partial list with some personnel insight:
1. Emotional blunting: the most hidden but the cruelest symptom of them all. It starts early and remains pervasive. This means your wife never receives so much as a hug from you, for years. When your wife identifies something horrible you have done to her your reply is” you will get over it”. This means when your daughter’s flight get canceled and she has to wait three days to get home for Christmas and her flight time is 13 hours instead of the typical 5 and she does this all for you, when you see her in the airport you stand there and don’t even acknowledge her. She isn’t home for 15 secs and this illness slaps her in the face. You violently kick the family dog in front of your son and don’t care. You don’t care about anything or anyone.
2. Mood changes: this means you curse and scream at your 16-year-old son in front of his friend for nothing. You laugh at eating an apple, you get hostile for no reason, you are unpredictable, at times threatening and frightening. You save the dark side for only your immediate family.
3. Apathy: It means you sit for hours watching TV, a man who was once a voracious reader, now watches TV 85% of his day and doesn’t care. Your children plan to burn the couch you sit in for hours a day because the sight of you doing nothing is so disturbing to them they can’t stand it.
4. Lack of insight: this means all of your inappropriate actions seem very appropriate to you.
5. Impulsivity: this means you grab food off of your son’s plate while he is eating, this means your wife can’t let you out of her sight because you will walk up to any stranger and start an inappropriate conversation at any time. You cannot be left alone in public, your wife can’t even go to the rest room without returning to find you speaking to someone about nothing. She sees the shock in the strangers faces but simply diverts your attention away from them.
6. Hyperoral: you hide food in your drawers or eat at such a fast pace that the friends you went out to dinner with sit in shock at your behavior. You do this for about six months then stop, but when will it return?
7. Poor planning and problem solving: this means the outline for the back yard flower bed is left untouched for years because you can never get past that step. This means picking out cloths to wear is a daily struggle. This means you can’t decide what you should eat at restaurants and often order what other people do. You cannot make a decision of the most basic in nature. When renewing your driver’s license you ask the employee if you should smile, she laughs and thinks you are kidding, but you are not. Your spouse takes over all of the responsibilities of running a household, along with taking care of you.
8. Personal hygiene: you have to be reminded to shower, your clothes are dirty Your spouse has to hide your summer jacket during the winter months so you won’t wear it when it is freezing outside. When you take a shower you stay under the water for seconds.
9. Language problems: this means you cannot infer anything from a conversation. This means you only watch game shows because you can no longer follow the most basic of plot lines. This means your family is constantly repeating what they say and how they say it. You are able to generate only the most superficial of conversations for years. People think you “look good” because of your ability to maintain these superficial conversation. I now realize about 98% of all conversations people have are superficial . This is what your family misses the most about you, your intelligence, your input into our daily lives, your ability to discuss things in depth. And this is why people miss how sick you really are and minimize what your family deals with on a daily basis.
10. Psychiatric symptoms: this means you become paranoid that your wife is trying to kill you so you threaten to kill her first. After this incident I stop counting our anniversaries. You convince your family you cannot read, but this is just one of your many delusions, you start reading again after 6 months. You believe that the pain in your leg is due to “sleep stored there”. This means you run around the house with a baseball bat because you hear a noise. Your wife and son live in fear that you will use the bat to hit them as they walk through the door or while they shower. You sit slouched down on the couch, so a sniper cannot hit you if they fire through your dinning room window. Your delusions are endless and bizarre yet hidden from the world for years. Your family can never trust you again and live in fear because you are no longer a rational person, you are capable of doing anything at anytime. It is this unrelenting stress that starts to kill the spirit of those around you. My soul mate, the love of my life, the man who I knew I was going to marry after our first date is now my tormentor.

There is no place for young demented people and their families, it is a disease of the elderly. I looked for support groups for my children. Any support group for children, regarding dementia, was for grandchildren. I located a support group for young adults who lost a parent, but was turned away because he was not dead. I guess our tragedy wasn’t bad enough to qualify. I went to an “early onset” dementia spouse support group, all of the participants were in their sixties, with grown children. I was 49 and had an 18 year old still at home. We didn’t fit anywhere, he doesn’t fit anywhere. Because of the early onset I became his caregiver plus my children’s, trying to make sure they survived this horrible disease intact. Eventually the relationship with my children reversed, they became my caregivers, offering unconditional love and support for all of the hard decisions that had to be made and the recognition of the care I provided their father. It was my daughter who finally said no more vacations with him. She was correct, the stress on us was immense and he didn’t care where he was anymore. I had so much concern about the effects of the illness on our son. He saw and experienced more that anyone his age should. At the beginning a lot of the aggression from Bill was directed at him. I had to balance the damage to our son against Bill’s care. Should I put the health of my son ahead of my terminally ill husband, or vice a versa? What kind of choice is that ? What parent would want to cause such pain to their child? I kept him home longer than I should have, certainly based on what our son had to endure. I put him in an Assisted Living Facility that specialized in dementia, he was the youngest person by 10 years. He was not with his physical peers but he was with his mental peers. It took me over two years of investigating facilities, to accept this was his future, never finding a perfect fit, just the best I could.
Humor, people told me to keep my sense of humor. What is humorous about losing your husband, the end of a life so treasured and the end of our family, nothing. Making jokes, laughter was not possible. When people use humor to get through the hard times, it is with mutual understanding. Suggesting I keep my sense of humor basically translates into laughing at my husband, not with him. He was unable to be in on the joke or enjoy the relief such humor gives. I found nothing humorous about this situation and still don’t. Everyone else can have a good laugh when it happens to their loved ones but may not insist that I do.
Prior to his diagnosis, knowing I was losing him I told him he was dying. I spoke of us not growing old together. He said he hoped I was wrong but he had led a good life and he had no regrets. When people say “cancer was the best thing that happened to them” I thought they were just putting the best spin on a horrible situation. However, when you stare death in the face, there is a different way of living. When you know that time is finite each day is different, how I wish I could live like that always. The poignancy of life, each moment of every day becomes special. Unfortunately knowing I was losing him, that precious time we spent together was all one sided. This disease robbed me of sharing this time together, his dementia caused a lack of insight into his deterioration, he missed his own death and I missed sharing that time with the man I loved. People thought I should find comfort in the fact “he was not suffering” but I believe this also resulted in him missing the most important days of his life.
I asked him where he would like to go/do, what he would like to see. With the dementia already starting to rob him of his decision making capabilities he could only think of one place: Hawaii. I had to plan the last years of his life by myself, guessing at what he would want. So we started his “farewell tour” with him not realizing what we were doing. We went to Europe, Hawaii, visited beaches we had celebrated many summers on, trips out west and Yellowstone in the winter. All of the trips were for him but not a vacation for me. I cried everywhere; in airport bathrooms, on planes and in hotel beds. Hawaii was especially hard; sitting on Waikiki beach watching the honeymooners and anniversary couples walking hand in hand. We were supposed to go to Hawaii for our 25th but I will never have a twenty-fifth anniversary. Surrounded by the beauty of Yellowstone, my tears fell for all he would miss, for how much I already missed him, how our children were robbed of a wonderful father and what his future held. He was hospitalized once we returned from Yellowstone, to receive the appropriate work up but I already knew what the diagnosis would be.
How many last goodbyes does one person get? Bill developed bizarre symptoms of fast breathing, turning blue and a rapid heart rate. The first time he did this I thought he was dying, I cradled him my arms thinking it was the end. But this “spell” stopped and he returned to normal within minutes. He did it again while alone with our son, terrifying him. These spells came and went without warning, up to ten a day for about a year, then it all stopped. I never had him worked up to find the cause, he was already terminally ill, there were to be no more interventions. Bill then developed consistent bizarre breathing patterns, his EMG demonstrated abnormalities which indicated he could have ALS, we were told he had 12-18 months to live, maybe 24. Three years later he is still here, breathing patterns remain abnormal but have not progressed. His delusions led us to believe he was progressing much faster than he really was. I took a month off from work to spend all my time with him. I had a wonderful time with him and treasure that month but he still remains. Thinking, believing you have been brought to the brink of death these many times only to have him not die is another unspeakable stress. Self preservation had to set in and it did.
For 4 years everything was all about him, getting him diagnosed, getting him the best care, enrolling him in research to help end this horrible disease for future generations. Taking him places, spending each day like it was his last but after 4 years I fell into a deep depression which took me months to recover. New Years Day brought endless sobbing, for hours upon hours. The thought of another year was unbearable. Another year of hopelessness, sorrow, pain. Thoughts of suicide filled my days. All of our couple friends had disappeared, except for one. Each day was filled with loneliness that had no hope of ending. After four years I changed, not for the better. It is hard to be a hero for years, I started getting angry. I started to hate him, the illness and the toll it had taken on our children and myself. One day I had this overwhelming urge to start pounding him with my fists. Why did he have to get the worst of the worst? All of the pain he had caused us, all of our pain with no end. Over the previous 4 years I had developed depression, insomnia, irritable bowel syndrome and constant muscle pains, our children suffered similar aliments. There was still no end in sight. It’s not socially acceptable to declare your hatred for your sick husband but I hated him. Certainly, I hated the illness but the illness wasn’t sitting in front of me, he was. I could no longer deal with the unrelenting stress of being a caregiver. Four years of stress, sorrow, grief, saying goodbyes in so many ways but he was still here. No he wasn’t, by this time he was gone, there was no part of his personality left, he was a robot without feelings, judgment, empathy, he was dead. I was a wife without a husband and worse; I was a person without hope. This was the end for me but I continued in the caregiving role for another two and a half years. He was still too well to be placed in a facility. If I had placed him solely because I was tired of it all he would have left that day. But I stuck it out because I felt a moral duty to honor the man who was my husband. I didn’t love him any more but he was my responsibility. I loved his memory but not this body. The reality is my husband loved me too much to want me to suffer. I believe he would have left two years earlier if he had any insight or capability of knowing what this illness had done to our children and myself. We were and continue to be suspended between the life and death of a man we no longer knew. I did the best I could for as long as I could but when he required supervision 24/7, that was my breaking point. So here I am sitting in the restaurant for the last night out, barely a survivor of the avalanche that started 6 and ½ years ago and still no end in sight.
Posted on 09/03/09, 10:09 pm