As of last Monday, Katie has been home for six weeks. I would like to report that everything has worked out and this care plan is now sailing smoothly. But since most of you are probably caregivers, you already know that there’s always a problem to be mitigated just around the next bend—especially in a scenario as complicated as Katie’s.
Ironically, even improvements bring with them another glitch. When I visited Katie on Tuesday, she was especially quiet and blue. When I asked her about it she said, “I’m not sure I will ever walk again,” and, “Every day is the same as the last.” I asked her if being home was better than living in the nursing home and she replied, “Oh, yes!” But, because Katie is much more aware and much more expressive she is also recognizing the profound extent of her limitations, unlike in the nursing home where she just slept through time.
On Tuesday, Sam said that for the past three days Katie had been crying out again. He doesn’t feel that he can stand it if she doesn’t get a handle on her pain. But then during Thursday’s visit he reported that Katie had shown improvement again–hence the roller coaster analogy. The OT recommended that Sam and Gloria give Katie a heads up before each and every movement when transferring and providing personal care. I reminded Katie that it is her responsibility to maintain control—she is the only one who can do it. Of course we remember to acknowledge the difficulty of bearing pain and to lavish her with praise when she does well.
The biggest UP that I can report is that Katie’s room is finished and that Gloria is now able to provide care independently for those times Sam must be away from home. That alleviates the need for Sam to make arrangements with the neighbors to cover when he is working at his part time job.
The biggest DOWN is really a bummer. The transfer of funding from the nursing home to the community was supposed to be a “seamless” process. Seamless, indeed! There has been NO transfer, so none of the vendors have been paid for the environmental modifications, consumable products have not been provided (such as diapers, wipes and barrier cream), delivery of equipment has been held up (such as the combination shower chair-wheelchair), and most importantly, the agency caregiver has not been paid (because she is living in the home 24/7, all she has received is her room and board). Obviously, this is causing a great deal of stress for everyone involved, and the problem needs to be rectified soon.
I have a few ideas for dealing with some of these problems, but I will leave that for the next post. In the meantime, I would sure appreciate hearing any thoughts and suggestions you experienced caregivers may have to offer.
The following article was written by: Carol Bradley Bursack, Expert Author, speaker, columnist and eldercare consultant and was taken from AgingCare.com, http://www.agingcare.com
Home » Caregiver Support » Tough Issues » Articles » Assisted Suicide and Elders: How Far Would a…
I have included the entire article as an addendum to my original post: The Conversation Project from 2-11-14. At a later date I added a comment to that post, which, I suspect, got “lost in the sauce,” so to speak. The comment was about the court case against Barbara Mancini, referenced in Bursack’s article below:
Assisted Suicide and Elders: How Far Would a Loving Caregiver Go?
Assisted suicide—illegal in all states except Oregon, Washington, Montana, Vermont and New Mexico—has recently been in the news because of the court case against Barbara Mancini.
Mancini is a Pennsylvania nurse who was accused of helping her father, 93-year-old Joe Yourshaw, commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die.
Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.
My mother, during her last two years of agony, would often a look at me as say, “Can’t you just give me a little black pill? “It was obvious to me what she meant and, of course, all I could say was that I couldn’t do that, but I would do everything possible to aid her comfort.
Yet, her pleading nearly broke my heart.
Mom had some mild memory loss at the time, but not Alzheimer’s disease or severe dementia of any kind. I had the Power Of Attorney over her health, though my whole family was consulted on all important issues. Early on, Mom had opted for a do not resuscitate code and, as a family, we supported her choice.
It wasn’t until doctors determined that Mom would likely die within six months that she was able to receive hospice care, which then opened up opportunities for better pain relief. I will always remain grateful to hospice for my mother’s improved quality of life during her last months. When her time came, Mom died peacefully and with dignity.
What if I couldn’t have secured hospice care for Mom and she had continued to beg me to free her from pain? What if I had the legal option that would enable me to honor her request? It was obvious that she was slowly dying anyway. Would I have helped her by supplying medication that she could, at will, use for a lethal overdose?
I’m not certain what I would have done, and I am grateful that I didn’t have to make such a choice.
I do know that years earlier, when she showed signs of colon cancer, I respected her wish to not take the tests any farther. She rightly told me that she couldn’t withstand the tests, let alone the surgery, so she didn’t want to do anything.
I simply said, “Whatever you want to do, Mom, I’ll support you,” and that’s what I did. She lived over seven years after that conversation, much of it in excruciating pain from various causes. Her dementia worsened as well. I’ve never had regrets about supporting her choice.
Whether or not her life was more painful or less so because of her decision, we’ll never know. She may have died years earlier on the operating table, or she may have had the surgery and lived with less pain those last years of her life. All I know is that she made her decision and I supported her. The whole family did.
When I think of what people must go through to be certified to legally accept help in dying, I’m not certain that she had the energy to go through that process, even if it had been lawful at the time.
A difficult decision, and a long process
In most states where assisted suicide is now legal, the person wanting to die must be interviewed by multiple psychiatrists and, of course, already be within a certain closeness to death. It’s not an easy process.
It’s also not likely an option for people with Alzheimer’s or another dementia since, by the time the disease brings them to the brink of death, they would no longer be legally qualified to make such a decision, due to their brain disease.
Even if people with dementia leave their designated Power Of Attorney for healthcare with specific instructions to help them commit suicide once they reach a certain stage, the ill person would no longer qualify for legally assisted suicide at that point, since dementia would be deemed to be clouding their judgment.
Some cancer patients, those with ALS (Lou Gehrig’s disease) and others who have diseases that will bring certain death, but won’t cloud their judgment, may consider the choice to end their lives at an earlier stage than natural death would allow. The point of the law is to mandate whether or not a chosen person can assist them by supplying the means.
Hospice and healing
In most cases, hospice care erases (or at least makes bearable) any physical suffering, though there are exceptions.
Hospice, however, does much more than just assuage physical pain. The program also offers spiritual counseling for the dying person and support for the family. This assistance can sometimes bring even splintered families together during this transitional time. While I’m aware that some hospices are better than others, my support for hospice is unwavering.
Sadly, as in the Mancini case, it’s not just physical pain that may exceed the ability of hospice to control, but the emotional and mental stress that, for some people, is too much to bear. That is when—I would imagine—assisted suicide becomes a consideration for some.
What happens after death?
In my opinion, some of the emotional turmoil about assisted suicide stems from each person’s perspective on what death is. If a person feels that the end of physical life is the end of everything, it seems to me that it would be harder to die than if a person believes, as I do, that the spirit lives on.
Obviously, I have not personally been in this spot, though I may one day face such a dilemma. What would I want my loved ones to do? My healthcare directive is clear that I don’t want to be kept alive under extreme circumstances. However, I wouldn’t want my loved ones to have the burden of deciding whether or not to help me commit suicide.
Just what is assisted suicide?
Assisted suicide is not euthanasia. The person assisting is providing the means, but the patient commits the act that takes his or her life. Still, assisted suicide is, by definition, assisted. Someone, be it a physician, friend or family member, supplies the dying person with the requested method used to commit suicide.
How far should a caregiver go in supporting the wants and needs of a beloved spouse or parent – or even their child – when the requested support may hasten death? The answer to this question will be debated for years, and no doubt more court cases like Mancini’s will be heard.
To some, Barbara Mancini is a hero for following her father’s directions and giving him his bottle of medication. With that in hand, he could decide when and if to commit suicide. To others, she is a criminal because she didn’t protect him from himself.
I suspect few people consider these issues more than those who care for suffering loved ones nearing death.
What would I have done in answer to Mom’s plea if hospice care hadn’t been enough for her and assisted suicide had been legal? I don’t believe I could have given her the means to die, but I can’t say for sure. I’m thankful that I didn’t have to decide.