March 26, 2013 —O.K., let me set the stage here: First, the soundtrack – a piece of music I heard for the first time, I think, last night: 19th-century French organist and composer Charles-Marie Widor’s Organ Symphony No. 5 in F minor, the toccata movement. You’ll find this piece on my “The Dream” playlist in the right sidebar, number 28. Those few of us who like to listen to classical music, the allegro molto tempo, while cleaning house, listening to this piece could deep clean our entire houses in five minutes.
Friends and others have questioned alternative ways of caring for an incapacitated loved one – keeping loved ones at home, placing them in nursing homes or frail care facilities, or a combination of solutions. There is no set right or wrong way, as long as the caregiver’s heart is in the right place. Loved ones in advance of their frailties may have expressed, even prepared for, their choices. Deciding what is best is an individual choice, a very personal choice. No matter the choice or the situation, you feel trapped – trapped by the patient, by the healthcare professionals, by your family, by yourself. As my writer friend T.J. Banks says, “You can’t help feeling as though your life has been taken away from you.” The situation bodes ill for other close relationships. I, personally, could not imagine having a man in my life while taking care of Emma. I often thought about it and wondered what I would have done with him.
Some of us discussed this dilemma last night on my LinkedIn women writers caregivers discussion board.
Here is where I lose it and vent: Read my book, Begins the Night Music: A Dementia Caregiver’s Journal, Volume I and coming soon, To What Green Altar? – A Dementia Caregiver’s Journal, Volume II, or read my blog.
I set up my LinkedIn discussion board a year ago, March 12, as a place for caregivers to vent, for, after all, none other than caregivers wants to listen; and we listen and support unconditionally. I, so far, had not vented. I suppose I have been too focused on dealing with the fallout of my mother’s passing, all the details to attend to, reintroducing myself to myself; and, besides, I was tired, just plain tired. Of course, you don’t recognize these indications until after they have occurred; I think mostly because you are still in the caregiver mode.
So, I vented, and I recapitulate Emma’s and my story, start to finish, here, for my blog, especially in case you are new to our story. I debated whether or not to publish it. Heretofore, I have spread the story of our journey across two years and in two books, served it like tea with milk and sugar and occasional rough biscuits. This encapsulation is raw. It may be hard to swallow. I write this simply to tell my story; it is like yours yet it will differ from yours. And, after all, it is not about me. It just is. It’s the place where I was, and the dark place where Emma lived during a relatively brief portion of her 97-year life. It’s what happened and now it’s past. I do not wish to go all back into it. This is it. It is finished. I let it go; I move on. This post, as the toccata in Widor’s organ symphony, is composed as the postlude.
Emma thought she would die at 72 of a stroke, like her mother. So, she spent all her money. Nursing home care would have to have been paid for by the state. I have heard horror stories of nursing homes here – patients lie in their urine all night long, and worse. I have visited nursing homes. I walk down the halls and see the patients lying in their beds, alone in their rooms. I cannot begin to describe the hollowness I feel – talk about a view within a room . . ..
People suffering from dementia/Alzheimer’s definitely need social interaction. How fully it helped my mother – it stimulated her, brightened her countenance, made her smile and happy. Even when we were in the room and not talking directly to her, she knew we were there and was as content as was possible.
I came to Delaware to visit family and realized my mother needed help. All my clothes, my library of books and phonograph records, my guitar sheet music, all I have written pre-computer, furniture, everything, was and still is in storage in California. I had no winter coat, even. I had to stay and care for my mother. There was no one else – my brother, living nearby then, rarely came to visit her. My daughter was in California. Emma’s other grandchildren were occupied with jobs, children and grandchildren, and lived at least an hour away. Ultimately I had to give up working, so I had no income other than Social Security. Emma received Social Security and a miniscule pension. She was 91.
I cared for her by myself, no aides from October 2001 until November 2008 when I got five hours a week “respite” care. Our car died. I could not afford to buy another one. Kind friends offered me rides or I walked to the store and became quite adept at packing Emma’s small shopping cart.
Simply, no other way existed to do this. We had neither insurance nor other monies to pay for help of any kind. The state allocated the respite care funds from federal Medicaid grants.
I got Emma a cane, and then a walker; I ran and got neighbors to help me pick her up when she fell. I tried to get more state aid or other aid. Most agencies did not return my calls, nor did the state.
I bathed my mother, changed her, fed her, watched her nose run into her food, rolled her out of bed, pried her hands loose from her bed posts so I could dress her, washed her bed linens – king size sheets, blankets, fluffy comforter often daily; slid in her poop in the hallway in my bare feet. I would make plans to go out to the store, only to have the aide not show up. I went to the mall once – once – only to come home and find that my mother had been left alone for two hours.
Finally, having been turned down by Hospice on the first try, we got Hospice, in October 2009. Eight months before Emma died, we rose to the top of the list in August 2011, after several people had died, for State Attendant Care Services, which meant that I had help 30 hours a week, seven days, including a driver. Emma became the employer; I, as her agent, administered the hiring, firing, wages and taxes. Federal grant money to the state was put into an account administered by a nonprofit organization, and I hired help. And one of those aides was fine until the day she sent her evil twin.
In the end, I had people (aides from hell) creeping around my house in the middle of the night to deal with Emma’s agitation. There were aides I told to leave and never come back. Even those words they didn’t comprehend. I sat up all night one night with Emma, so agitated she was climbing the walls and trying to get out of her hospital bed. “How did I get here? How do I get out of here? Can anybody tell me how to find the subway home? Bob! Bob! Where’s Bob? [my brother] Mother! Mother!” She had gone all the way back. She was calling for her mother. I sat beside her all night and held her hand. This was the only thing that calmed her. I told her it was O.K., that she could go.
My social worker/writer friend Beatrice Hale is right – “Grieving begins before diagnosis, and goes on long after.” You spend years watching your loved one slowly slip away. By the time your loved one passes it is such a relief, a release for you both.
To put Emma in a nursing home would have required Medicaid to pay for it (state aid) and that required having a Miller Trust. I would have had to put nearly all Emma’s income into this Miller Trust fund. That money would be applied towards paying for the nursing home care. Moreover, in the end, since Medicaid likes to be repaid anything still owed, they would have taken our home in payment.
Now, of course, that my mother’s income is gone and we needed both to pay the mortgage (she bought the house in 2002; I added my name to the deed in 2011), and other household expenses, I need to find a way to make up that income to pay the mortgage.
I fully realize that I could be in a much worse situation. I am most fortunate to have a roof over my head, to have good friends, loyal friends and to have had such extraordinary help in the last few years. I really do have a Team of Not-So Rivals, friends who are smarter than I. I have faith, one of the things I learned as a caregiver. If I didn’t have faith, trust, I would sink. Maybe I sound Voltairean: “All is for the best in the best of all possible worlds.”
Many people have it much worse than I, way worse. I am blessed.
Nonetheless, let me say this: If you have money/insurance to pay for your care, then use it. Decide now what you want for the end of your life; talk it over with your family; put it in writing; get all your legal work in order.
Those who are nurses, healthcare aides, social workers dedicated to their jobs exceed life’s call to duty. I don’t know how they do it. They are extraordinary beings.
Ah, that organ toccata is invigorating. Possibly I’ve drunk too much toccata juice. This needed to be said; this story needed to be replayed. People need to know. This isn’t a walk in the park. My writer friend T.J. says caregivers have that look – I think maybe almost of shell shock. And it does change you, as we caregivers know. So, what do you give a caregiver getting to know herself again after her loved one has passed? T.J. suggests, “Get her a ‘pamper-me’ sort of basket – soaps, books, candy, whatever you think she would like. After all, she’s just starting out on a journey to find herself again.”
Moriarty wants to know if he can come out from under the desk now.
My Dear Friend,
This is a extremely moving piece of writing, and I can identify with every word you have written. I had to take care of my mother along with my brother the last year of her life. The cancer came back, and then she had two strokes. The first stroke wipe out part of her memory, and the second stroke led her into dementia. I was in Germany, but I went home five times, for three weeks each time, to relieve my brother and give him a chance to breathe a little.
Although I have other sisters, no one took the time to come by, and they had a problem relieving my brother who had given up his job to concentrate on taking care of Mama. My brother and I did it together. The three weeks when I was there, he relaxed, and I can honestly say each time I flew back to Germany, I fell asleep on the plane before it took off. I was just that tired.
Yet, I don’ regret it, and I am happy that we did it that way. My mother was able to die as she wanted to, at her home.
I so agree with you about making plans about what you want to happen to you and arranging a care plan. It is so important to do that while you still have the ability to do that on your own.
So thank you for venting. Thank you for your open and honest sharing. Thank you for telling it like it is because many people don’t know and are surprised when it hits them.
You have written a very informative article that I have truly enjoyed reading.
This is why I told it like it is, Patricia. I figured it was about time I did so. True, most people, as I, are surprised when it hits them. So, thank you for sharing your story about your mama. I know there are more of us out there in this caregiving situation, but we just don’t say anything about it. We just do. We want our loved ones to spend their last days as peacefully as possible. And, as you said, I do not regret what I did. I don’t know how I did it, yet I did. Would I do it again? Probably so.
Thank you, Patricia, for your beautiful comment.
The true way leads along a tightrope,
which is not stretched aloft
but just above the ground. It seems more designed
to trip one than to be walked upon.
Beyond a certain point there is no return.
This point is to be reached.
– Franz Kafka.
Samantha, thank you for this post. I raise my glass of toccata to you and all the superb comments and metaphors.
It is always amazing and heartening to me the source of strength that is there in each one of us; and how often it is that we need to go through horribly painful experiences to reach that point where we acknowledge and use that strength. And how others do come to help and how we need to accept their willing help. So often it is harder to receive than it is to give.
May your strength continue to runneth over.
Susan, thank you for the Kafka quote, one of my favorite authors. I trip over that tightrope often. You put so succinctly here the essence of life — the pain, the source of strength and the blessing of the willingness of others to help.
Thank you, as always, for your deeply thoughtful comments.
Wowie T.J. You have described it absolutely perfectly. It is trench warfare and it cann take a long time before our eyes adjust to the light. It took me over two years to come up for air after my parents went into care here in Lethbridge. It also took a wonderful man in my life to really help me to thrive again. Fortunately for me he was also my very best friend.
The wonderful man, Val. Yes. You are fortunate in your BFF. Thanks.
Putting it mildly, you have gracefully stated the truth.
Would, that your toccata juice globe runneth over.
Thank you, R. I raise a globe of peace to you.
Boy, talk about Post Traumatic Syndrome Disorder after a soldier returns from battle… is exactly what a caregiver goes through after dealing with the family member, the family, bills, caring for the family member, etc. You have definitely summed up caregiving. I totally agree with T.J. Excellent!
It definitely calls for a goblet of toccata juice, Gwynn. Thanks. I know you know, too.
This sums it all up, Samantha. Care-giving is, in my mind, the equivalent of trench warfare: and when it is over, we crawl out of those trenches blinking like moles in the sunlight, amazed that there is another world out there.
You bring the war home, as they used to say. You make it real. Thank you for being our not-so-foreign correspondent and a damn good one.
T.J. — Blinking like moles in the sunlight. No kidding. I love your entire analogy here. You hit this subject, the feeling, the experience point-blank. Not only that, but you got in in advance of my little army of words — I was making minor edits — to dates, music, while you were commenting. Love it! Thank you; I know you’ve been there in those trenches.