My dad went into surgery with a smile and hope. He came out with severe dementia. Something unexplainable at the time had happened and Dad became a statistic – one of those “poor outcomes” we hear about. My head knew this tragedy was permanent, but my heart wanted my “real” dad back. The kind, loving, intelligent man whose love for me was steadfast. I wanted him back. Unfortunately, my family and I had to learn to accept the fact that Dad would never be the same.
End-of-life discussions may not seem to fit with the commonly cheerful image of the holiday season. After all, who likes to talk about potential death? Yet, too many people die in a manner they would not choose. When we consider that the true reason for this spiritual season is to celebrate our faith, what could be more fitting than incorporating the message that we want the best for our loved ones for their entire life - and that their life will include the death process?
Dear Carol: My mother was diagnosed with mixed dementia (vascular dementia along with Alzheimer’s) at age 67. She’s now 75 and the doctor says she’s in Alzheimer's stage seven. She’s had two strokes and takes medication for high blood pressure. Mom doesn’t know anyone and simply sits and stares into space without reacting very much. All of her doctors are vague about her life expectancy. I don’t expect the doctor to know exactly how long she will continue this way but I’d like some idea. Are they uncomfortable with my question? PT
Whether or not November was chosen as National Hospice and Palliative Care Month because of the sad reminders of holiday deaths that Thanksgiving and Christmas bring around each year, I don’t know. But to me, the timing is perfect. All deaths leave behind days on the calendar that are particularly painful for loved ones. Birthdays, wedding anniversaries, the births of children and grandchildren. All magnify the lack of presence of the deceased person. However, Thanksgiving, Christmas - and even the New Year - come around at the same time for all.
Dear Carol: My family is having a serious disagreement over signing papers for our mom who has just entered a nursing home. I have Power Of Attorney and am favor of signing a Do Not Resuscitate (DNR) form for Mom. She has always told us she didn’t want to linger when her time came. While she is going into the nursing home for physical, she is showing some signs of early stage dementia so it’s important that we get this done. My brother and sister both think that a DNR is cruel and that it’s like killing Mom. They think that everything should be done to keep her alive as long as possible. Her POA even states that she doesn’t want to be kept alive at all cost. Because of this, I think I can push through the DNR, but I feel bad because my siblings are upset. I know that they don’t want to see Mom suffer unnecessarily but they feel guilty taking this formal step. How do I get through to them that there’s a point where people allowed to go? CD
Join us at Eventide for "Living with Alzheimer's" presented by Hospice of the Red River Valley and the Alzheimer's Association of Minnesota/North Dakota. The event will be held September 13th from 7:00 to 8:30. There will be lots of time for questions. Hope to see you there!
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care. The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.
Forgiveness, or the lack thereof, can loom large in the life of a caregiver. Forgiving doesn’t mean forgetting. That is rule number one for people to remember when they are working toward crafting better relationships with family members and others whom they care about. Forgiveness can have enormous benefits for the health of the person who does the forgiving. Considering that negative thinking can be disastrous to your own health , you may want to work toward the positive habit of forgiveness. Here are some people that you may need to forgive along with reasons why you should.
As a seasoned caregiver of multiple elders, I can choose to torture myself with my perceived failures at being a perfect caregiver, or I can choose to forgive myself for being imperfect, and recognize that I did the best I could at the time. You have the same choice. Much like an adult who realizes that he or she has a "wounded child" living inside – a child who suffers from unearned self-blame or low self-esteem because of life events – many adult caregivers carry the guilt from their "infant" caregiving years to their grave. They spend precious time thinking about how they should have understood someone's needs better, could have been more patient, would have done any number of things better, if only they knew then what they know now.
This post is about another study, my friends, but this one is more personal for me. A report in the February 25 issue of Archives of Internal Medicine titled "Study examines antibiotic use among nursing home patients with advanced dementia," reminds me of a situation with my mother-in-law. Alice was in a very good nursing home and flourishing. Before she was admitted, her life in her condominium - no matter how much attention and care we gave her - had become unsustainable. She was afraid and paranoid. She couldn't look out the windows because she imagined bad things, so she kept her shades drawn all day. She was even afraid to retrieve her newspaper from the hallway. She wouldn't go out.