Harriet is still recovering from her flight to Detroit, Michigan, from Florida and Mother’s Day. I am still in Florida, with my Dad, who is very sick. Because of these things, neither one of us has a Caregiver Journal article ready. Therefore, below is an article that I wrote, for the Caregiver’s Survival blog, but never posted. I hope you enjoy reading it.
Out of Moria, is written to encourage Caregivers to keep on, keeping on. I don’t recommend that anyone with Dementia read it. I’m afraid it might bring only sadness to your heart. ++++++++++++++++++++++++++++++
Life is an adventure. However, if you’ve ever read adventure stories, you realize that they have good times and bad, times of relaxation and times of danger, places of beauty, life, and joy, and places of death, corruption, and bondage. My favorite fantasy/adventure story is, The Lord of the Rings. Sometimes life is like being in Rivendell, peaceful, joyful and secure. At other times you’re in the Mines of Moria, the Orcs are after you and just when you think it couldn’t get any worse, a Balrog shows up.
My wife, Harriet, and I have been walking together on the adventure of life for almost 50 years. It did not occur to us that Frontotemporal Degeneration would become a part of our adventure. Since receiving the diagnosis our lives feel like we are in the Mines of Moria, unsure of the way, not knowing what to expect next. We don’t know what new danger or complication lies around the next bend; an army of Orcs, a cave Troll, a narrow bridge with an abyss on both sides, or a Balrog? Fortunately, like the hobbits, we, have a team of people helping us. Experts who have been here before. Some have amazing powers, almost like wizards, others like great warriors defend and protect us. These are: doctors, lawyers, therapists, and lay people who speak, both one on one, and through books, articles, You Tube, television, and Facebook.
We move forward, one day at a time. We are both aware that one, or possibly both of us, are not coming out of Moria alive. It is guaranteed that FTD will hold Harriet until her death, because this is a disease unto death. But, did you know that 40 – 70% of caregivers die before, or just after, the one who is struggling with dementia? The odds of both of us coming out of Moria, alive, are slim.
On the way into the Mines of Moria, Gimli boasts about what a great time lies ahead of them. He says, “My cousin Balin will show us a grand time; roaring fires, Malt beer, Meat off the bone, and they call it a mine.” Suddenly they realize something is wrong, dead dwarves lie everywhere, and they have Orc arrows sticking out of their corpses. Gandalf yells, “Make for the Gap of Rohan! Every one Out!!!” As they attempt to run out of the mine a Monster rises from the lake outside forcing them back in, destroying the only way out.
Isn’t that exactly what happens when you realize that dementia has come into your life. We all have life plans made, which include, travel, retirement, grandkids, education, etc. We look forward to, “Roaring fires, malt beer, and meat off the bone.” Suddenly, you realize that dementia has you in its grip, it sounds like a death sentence. The more we read and study the more death and destruction we see. We want to run away from the Mines of Moria, that have become a tomb, but the monster Dementia has made escape impossible. We want to go back the way we came but Dementia has destroyed the exit.
Now begins the long walk through the Mines of Moria. As you walk through Moria, Orcs will attack the one with Dementia, again and again. There are so many Orcs, and so many losses, of language, memories, abilities, everything that makes them who they are. The attacking Orcs are relentless, they know that they will destroy every ability our loved one has, to the point where their brain will no longer be able to support life.
The Cave Troll follows the Orcs and, desires to take out the Loved One with a quick attack of pneumonia, an accident, or some other event that kills them. While there is little, or nothing you can do about the Orcs, the damage to the brain cannot be stopped or slowed down, you can watch out for Cave Trolls. I’ve known people who keep sharp knives in a locked drawer. The Knife Block on the top of the counter is long gone. Guns are sold or hidden. Power tools have been put into locked storage. Any way that the Cave Troll can use to quickly kill the Loved One needs to be dealt with.
The time will come when I will have to take care of Harriet’s medications, to avoid overdose, or her forgetting to take the pills at all. I keep an eye on Harriet’s health, encouraging her to call the doctor, if I think something might be wrong. There has even been a couple of times, when I have called and made an appointment when she was being stubborn.
Harriet used to be good at knowing when something was wrong in her body and when to get medical help. Now, she doesn’t trust her own judgement and has wound up in the hospital three times, twice with pneumonia, and once with a pulmonary embolism. I can’t totally blame her for the hospitalizations. One time I took her to an urgent care, the doctor said it was only Bronchitis. He never took an ex-ray, only listened with the stethoscope. The very next day I took her to the Emergency Room, and when she walked in the door, her oxygen level was around 69%. They told her that if she had waited much longer to go to the ER, she probably would have have died.
Some people, with Dementia, go through Moria very quickly, others will go on year after year. The average time from diagnosis, to death, is 7-10 years. However, some people will only live 3-4 years, after diagnosis, while others will live for twenty years or more. Long time or short, eventually, the Orcs will do so much damage, that the loved one will die.
Just before the Gate to Dimrill Dale is the Bridge of Khazad-Dum, a narrow way over an abyss, that the Fellowship must cross. The Balrog, chasing them, comes to the far side of the bridge, Gandalf, stands in the middle of the bridge, and tell it, “You cannot pass!!” The Balrog advances on to the bridge and the first half collapses and falls under his weight. Gandalf turns around to leave, and the fire whip, from the Balrog, pulls him off the bridge. Gandalf is about to fall into the abyss, and he says to the rest of the party, “Run, you fools!”
JRR Tolkien was a faithful Catholic, who believed in the resurrection of the dead. In some ways Gandalf is like Christ, falling into death, destroying the demonic powers and rising again. Tolkien believed that we will all fall into the abyss of death, but through God’s grace, many of us will rise again. Like Gandalf, our Loved One with Dementia, will fall into death, and we will not see them again until the resurrection day. When the day comes, that the one we love, goes into the shadows, we must remember Gandalf’s words, “RUN, You Fools!!” and head for the exit. If we linger too long, in the Mines of Moria, we too might never come out.
What can I do, as a Caregiver, to increase the odds of coming out of Moria? The only way the Hobbits made it through was to stay in the Fellowship. If they had tried to find the way out alone, they would have died. The life-giving fellowship was quite small, compared to the thousands of Orcs living in Moria, but staying together was matter of life or death.
Remember how the fellowship developed out of a meeting in Rivendell where everyone discussed the danger before them? You too, need to have a family meeting, bringing everyone on board, and see how many will continue on the journey with you. Don’t be surprised at how many will argue that there isn’t really a problem or danger at hand. We’ve had to exclude, from conversations, a few family members who believe that Harriet is faking the whole thing. Others, who I thought we could count on, have opted out. This seems to be the way most families are. This is one reason Caregivers feel so isolated and lonely.
Our team includes, our primary care doctor, a Neurological Psychiatrist, the family lawyer, and volunteers, both family and non-family members, who will stay with Harriet, or take her somewhere when the need arises.
Finally, one of the most important, and most difficult, thing to do is to find time for yourself. I’m not very good at this and my weight gains prove I should try harder. However, my plan is: Harriet doesn’t sleep well and often doesn’t get out of bed before ten or eleven o’clock. I try to get up around six, which gives me four hours to do what I want. This includes, morning prayer, weekday mass, breakfast with friends, men’s club meetings, writing, or whatever else I desire to do.
In the future, if we can find a place for Harriet to go to, or someone to stay with her, I will take off a day or two a month. I plan on going camping, fishing, hunting, and hiking on those days. In this way I can get out of Moria for a short period of time and unwind.
On those days when I cannot get up early, or get away at all, I can still relax as I take a shower, go to the bathroom, prepare meals, etc. There seem to be micro-periods throughout the day for self-care. Of course, Teepa Snow’s, “Three cleansing breaths, five times a day,” are a big stress reducer. I look for, and take, any chance to relax, including singing, whistling, and playing my favorite music.
When all is said and done, will you come out of the mines of Moria alive? Remember how beautiful Dimrill Dale looked after the gray, dark mines of Moria? One day, by God’s grace, we will leave these gray days behind and walk again in the free land of blue skies, green grass, babbling Brooks, and beautiful trees. Will you take Gandalf’s advice, “Run, you fools,” and leave Moria far behind? I pray that by, remaining together on this journey, all of us will live well beyond the Mines of Moria.
Please pray for us. You can be sure that we are praying for you. ++++++++++++++++++±++++++++++++
If you are a Caregiver, I hope you will consider becoming a participant in, I Am Not Alone Monday. Please download, fill out, and return the forms to Dr. Martha Garmon. It will bless many people. Thank you for considering this.