All caregivers feel guilt, especially once the diagnosis has been given. Early on we don’t understand why the person with memory loss speaks or acts the way he/she does. I used to get angry at my husband thinking he was not listening to me or didn’t care. It was frustrating, but that was because I kept comparing his actions to the way he used to behave as a fully functioning and competent person…..but slowly over time he had changed.
In this world, we need to love and be loved. We also need to feel a sense of competence or mastery in order to feel good about ourselves. Alzheimer’s slowly dismantles a person’s sense of competence. While living with this disease, the AD person and their spouse, family members, or caregiver(s) do an emotional dementia dance where the steps are always new and always changing.
Many of us will be faced with caregiving when our children are long grown and we are watching our grandchildren grow up. Some of us are faced with caregiving in our 40’s while our children are just beginning adulthood … or even earlier! We were one of those in the sandwich generation, helping take care of our parents and children at the same time. A bit later, I was faced with caring for my husband too.
This week is a very hard time for me. I am visiting a friend and his wife as he is transitioning for his walk across The Rainbow Bridge. I met the couple just about 10 years ago, when they reached out for support to the Alzheimer’s Association, and the association matched them up with me in order to help them adjust to a new city.
When focusing on hospital admissions/stays the word delusions pops up a lot, especially when describing our elderly population. What is the difference between delusions and dementia? Here’s an explanation.
These adds infuriate me. They prey on people who have the diagnosis of dementia, but don’t realize how drug testing works. Yes, experiencing the beginning signs of memory loss can be a scary thing, and these adds are directed at your fear. Most of the items that appear in these types of adds are not really considered drugs. They are classified as supplements.
Periodically I will search the web for newly publicized results of trials and will post them here. So far, no “magic bullets” have been discovered and many scientists are focusing on present healthy populations to see what lifestyle differences may benefit/protect the participants as they age.
It’s a multi-year study so we won’t be hearing what they have learned for a while!
This is a big deal. After so many years of failures in finding a drug to stop or even slow down the progression of Alzheimer’s disease (AD) most researchers have moved their focus to prevention of the disease before and signs or symptoms of dementia show up. This leaves those who have already been diagnosed feeling like they have been forgotten.
This study involves a precursor of the drug riluzole, a drug that has already been approved for ALS (amylotrophic lateral sclerosis, 1995). This precursor or “prodrug” as they call it is a related compound with lesser side effects that when taken is converted by the body into riluzole. It’s name is Troriluzole. The fact that it is converted by the body makes it a safer compound as well as more easily tolerated. For ALS, riluzole is an important find. Although it doesn’t cure the disease or quell the symptoms, it has been shown to increase survival time by at least a year and a half.
I have been thinking about sacrifice for a great number of years. The meaning I’m referring to is “to give up something usually for a better cause”. As a caregiver, I sacrificed a lot of things in my 19 years: autonomy, independence, companionship, sexuality, and financial security. Being in a very loving marriage, I had to help my husband through his disease. He had no choice, and I woudn’t even consider the other major choice which was to leave him! Some people do.
For seven years I have kept Jim’s ties in a bag. I wanted to make a memorial wall hanging for our son that would truly spark memories. Jim was a school psychologist and family therapist. Some of the ties he wore had Santa, children, and frogs on them to help interest the children he saw.