On both my other article archive site and on this site, I have chosen to respond only to comments emailed directly to me as opposed to responding to comments posted online. Here are a few of the many comments I've received via email in response to individual postings in my series, "Reflections of an Alzheimer's Spouse." Each comment points to important issues for all Alzheimer's caregivers.
From a male spouse ... "It (Alzheimer's) is a living death. Euthanasia should be legal. We are fortunate we can afford assisted living; few people can. I am so very ready for this to be over." This reader addresses three major concerns ... the high cost for long term care, the horrible way one dies with AD, and the effect that the slow death of a loved one stretching over many years can have on caregivers.
As I have mentioned elsewhere I, too, am fortunate to have an excellent long term health care policy that enables me to afford assisted living for Clare ... a yearly cost now just under $80,000. Our government simply must address long term care costs for people with Alzheimer's and their caregivers and I will soon post a blog solely on this topic. Caregivers need to advocate for such assistance.
Another issue this reader addresses is the agony of watching a loved one die a slow death. Should euthanasia for those in end stages of Alzheimer's be an option that should merit discussion? What about solely palliative care in hospice? Caregivers and loved ones should address end-of-life issues as soon as a loved one is diagnosed with Alzheimer's so a living will and health care proxy can be prepared. Does a loved one want all extraordinary measures to be taken to sustain life, such as inserting a feeding tube or being hooked up to machines? Does a loved one want to be moved from a nursing home to hospice at some point? End of life planning in advance, and designating someone to have durable power of attorney to make decisions when the loved one is no longer able to do so, will provide guidance in this important area. Euthanasia is currently illegal in the U.S., but PAD (Physician Aid in Dying), more commonly referred to as assisted suicide, is legal in Washington, Oregon, and Vermont.
From a female spouse ... "Those of us in the trenches with a younger spouse are affected in a unique way. The marriage is lost. The finances are shot. The future is toast. I think all of us who have experienced this hell are in a unique sort of 'family' position with one another. No one else can really understand." This reader speaks to the need for more attention to be given to those diagnosed with early or young onset Alzheimer's, and their caregivers. Issues can be very different if Alzheimer's strikes in one's 30s, 40s, 50s or early 60s than if Alzheimer's develops at an older age. As horrible as Alzheimer's has been for Clare and me, I am thankful that we were already retired by age 63 when Clare was diagnosed. Had Clare developed Alzheimer's while we were both still working, or while we still had young or even college age children to care for, I cannot even imagine the extra toll these other issues would have taken on us. Too many people think of Alzheimer's as only a disease of old age, but according to the Alzheimer's Association, at least 200,000 people have young or early onset Alzheimer's diagnosed before the age of 65. http://www.alz.org/alzheimers_disease_early_onset.asp
From a son ... "My mother developed dementia and the stress divided our family apart; many of us do not speak after twenty five years." I have witnessed such family stress from caregivers in my own support group. It would be nice if caregivers made decisions with everyone else in agreement, but that does not always happen. Primary caregivers should listen to different opinions from caring family or friends, but in the end all caregivers must do what they think is best for their loved ones ... and move on. Not everyone may agree and family members may be extremely upset with some caregiver decisions, but that simply cannot be helped at times.
From a daughter ... "Watching her feel so insecure, confused, lonely and sad is ripping my heart apart. I feel helpless." Feeling "helpless" is often a description of the most caring of caregivers. Alzheimer's caregivers are often literally helpless to make things better for those they love the most, despite their best efforts.
From a daughter-in-law ... "We feel like we are watching them both die....him from the stress and her from the disease itself." This reader addresses the tremendous toll that caring takes on the caregiver. According to an online article by the Mayo Clinic on caregiver stress http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiverstress/art-20044784?pg=1, caring for a loved one strains even the most resilient people and can lead to symptoms of depression or anxiety as well as increasing "risk of medical problems such as heart disease and diabetes." As one who has experienced stress on a daily basis, including symptoms of anxiety and depression, I can understand how a caregiver's health can easily go downhill by watching one's spouse slowly die of Alzheimer's.
I would suggest that getting into a good support group might be one place where caregivers may find help to deal with some of the issues noted above. Caregivers may be able to find emotional support and hear suggestions from others in similar situations, and I plan to address the topic of support groups in a future blog.
Thank you to all who emailed comments and questions to me. We must try to educate the public about Alzheimer's. One reader put it very nicely: "Thank you for bringing attention to this disease. Too many people think Alzheimer's is forgetting where you put your keys. I have told many people, it's actually forgetting what a key is and what it is used for." We must also find a way to motivate our government to invest more in Alzheimer's research because, as another caregiver wrote, "No one's life should end like this."
Now that my ten part weekly "Reflections" series has concluded, I plan to post biweekly from now on, starting with "Alzheimer's and the Media ... Follow the Money." Readers of this blog are invited to learn more about my journey with Alzheimer's, and read copies of more than 40 of my articles previously published in caregiver magazines, medical journals, and newspapers at www.allansvann.blogspot.com. Readers who would like me respond to their comments or answer any questions about my Alzheimer's journey with Clare are encouraged to email me directly at acvann@optonline.net.