JOAN’S WEEKEND BLOG –MAY 10/11, 2008 –LONG-TERM SPOUSAL CAREGIVING – IS THE TOLL TOO MUCH?

There has been much discussion on the message boards lately of “spousal caregiver burnout” , when the caregiver spouse begins to question – “Is this my life forever; what about my needs; must I live in this Hell for 10, 15, 20 years?”  When this is finally over, will I be mentally and physically healthy enough to enjoy life again?

Caring for a spouse with any long-term debilitating illness is difficult, but Alzheimer’s Disease comes with its own unique set of problems. You lose the person who was your spouse, lover, and partner, long before death takes them. You lose intimacy, conversation, companionship, friendship, togetherness – everything that makes a marriage. You become a widow/widower with a living spouse.

You lose friends, money, and time you thought you had in abundance. You begin to lose your “self”, and become only “the caregiver”.

To make matters even worse, as has been mentioned on the message boards more than once, many of you are expected to accept and endure verbal and emotional abuse from your AD spouse that never would be tolerated in a conventional marriage. You are to turn the other cheek with kindness and patience while the person you vowed to love forever, is screaming, swearing, and hurling insults at you. All the while, you are admonished by the experts  – “It is not your spouse; it is THE DISEASE.”

The question becomes – “How long must I endure this? Can I divorce? Should I divorce? Many of you would never consider such an option, but some have had the courage to ask the question. Some have considered sending their spouses to live with another relative; to live in an Assisted Living Facility without them; others have found living arrangements for themselves while their “earlier stage” spouse lives at home alone.

People used to suffer a catastrophic illness and die. Due to advances in medical science, people still suffer catastrophic illnesses, but they live – not necessarily the best quality of life – but they can live for decades in debilitating conditions. In Alzheimer’s Disease, the “personality” and abilities may die many years before the body. Which leaves the spousal caregiver, not only physically and financially devastated by the end, but emotionally shredded. Thus the question – “How long must I endure this?”

Although I have no answers – only you can make the decisions that are best for you – I think it is extremely important, and definitely time, to enter into these types of discussions. Even the “experts” are beginning to address these issues. Below is an excerpt from a lengthy article – “The Vow” by Liza Mundy, which is from Washingtonpost.com.  If you click here, you can read the entire text of the article. It does not single out Alzheimer’s Disease, but discusses the impact of many debilitating diseases on the caregiver, particularly the spousal caregiver.

“IN THE PAST SEVERAL DECADES, SOMETHING KNOWN AS "FAMILY CAREGIVING" HAS ENTERED THE AMERICAN LEXICON……... Within this group is a subset, an estimated 14 million who are caregivers for their spouses. Most are aging wives and husbands taking care of older or sicker mates. But some, such as Dave Kendall, are caring for spouses at a far younger age than would be reasonably expected.
………. There have always been wives and husbands who went to bed, as the saying went, and never got up. What's different, now, is that people with serious injuries and degenerative conditions tend to live longer than in past eras. For their spouses, this can be a blessing -- the person you love is still alive and with you -- and a prolonged challenge.
…………… They are taking care of spouses suffering from traumatic brain injury, paralysis, stroke, cancer, multiple sclerosis or early onset Alzheimer's. Anderson's first wife was diagnosed with scleroderma, a hardening of the skin that paralyzed her digestive system, when they were both 30. With the help of an IV line and medication, she lived for 29 years.
Now, people get ill and -- survive. And their spouses face a series of dilemmas that boil down to: Was this really what I signed on for?
These are vows you "made when you are 20, 21, and you don't know what's going to happen," says Carol Levine, a medical ethicist who cared for her husband for 17 years after a car accident left him cognitively impaired and immobile.
Divorce rates are high in marriages where one spouse is severely injured or chronically ill. Adults suffering from a chronic progressive disease such as multiple sclerosis are 60 percent more likely to be divorced than adults who are healthy. "There's an awful lot of spouses -- age 45, 50, 55 -- who say this isn't what I had in mind for this period of my life," says Kelly Thompson, an Arlington attorney who represents people with disabilities and their caregivers, including Dave. In some cases, the ill spouse becomes abusive, verbally or physically. ………
In other cases, the absence of physical intimacy and social companionship becomes unbearable for the healthy spouse…………”

This is not an easy subject to discuss, but it is an important one, and as always, the readers here at thealzheimerspouse can feel comfortable doing so with respect for each other’s opinion. There are two topics on the Message Boards that relate to this Blog - Are we allowed to ask this question? and Break up of the marriage.

Note: I am leaving for the Alzheimer’s Public Policy Forum in Washington DC on Monday. I will write updates from Washington periodically – Joel (California technical son) will post them for me.

Feedback to joan@thealzheimerspouse.com

View Printer Friendly Version

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

The Alzheimer Spouse LLC 2009 All Rights Reserved