At this point, we have started on the Bredesen protocol and I have begun researching clinical trials that my dad may be eligible for. Does anyone here have any other suggestions for things I can do to help my father? He is 76, MoCA score of 23 and processing speed in the lowest 1% for his age group. I have seen a fairly rapid decline in the last 6 months.
A warm welcome, Irish girl,
I am sorry that you and your family are dealing with yet another diagnosis of AD, and yet also glad that you are so willing to support your mother and father in these important years. As far as clinical trials, you may have found the website for Clinical Trials,gov; the Advanced Search function is helpful to narrow your results to where your dad lives. https://clinicaltrials.gov/ct2/search/advanced?cond=&term=&cntry=&state=&city=&dist=
It's worth talking to your mother about whether she is able and willing to be a "study partner" and accompany him to the study site. In any clinical trial, he is likely to have a 68% chance of being on the study drug, and a 32% chance of being on a placebo. But in his place, I would go for a trial, and am now in the Generations Trial for asymptomatic ApoE 4/4 people who are 60-75. If your Dad is a veteran, there may be programs at the regional VA for both him and your mother as caregiver; the Dept. of Defense actually spends millions each year to fund research from universities and at VA centers focused on getting the most impact for quality of life, and reducing caregiver burden, in addition to treatment options. There may also be programs available at Memory Clinics in regional teaching hospitals that provide support to both people with AD and their families. My 34 year old daughter has two friends whose fathers have recently been diagnosed with AD at the age of 68, and both are working with regional teaching hospitals that provide regular monitoring and support for families.
A lot of people are trying to look at what helps caregivers as well as those dealing with early AD. I would encourage you to talk with your mother about what responsibilities she feels comfortable taking on that your dad used to handle and what she might like help with from you or other family members. For example, my own mother was happy to let me set up online banking and with a durable Power of Attorney, I was able to help her close out several small bank accounts that she had for decades. consolidate checking and savings to a local bank she could drive to, pay almost all bills online myself, or have them deducted automatically from her checking account, and have myself listed as the person to whom all auto and home insurance paperwork came. If you dad had been handling finances, and your mom is not as comfortable with that, she may welcome the chance to have you help out.
Chances are your dad was the handyman around the house, and would probably still like to mow the lawn, clean the garage, and climb on the roof! You or your mom may be able to negotiate with him so that he still feels he's contributing to the family. My mother raked leaves well into her mid-80's, even after she wasn't driving any more, and loved doing it.
My own parents made similar comments to your dad's "beach" comment when my grandmother was in a nursing home, and I was in college, although they called it "taking a little pill" option. My dad died of cardiac arrest at 67 (no doubt from ApoE 4-related heart disease),, but my mother found a certain level of serenity as she moved from mild forgetfulness to not finding her way home, to needing more intensive support. She never lost the sweet personality and excellent language skills. Correcting typos on posters in the nursing home during her last two months of life is actually a warm memory. I think it helps to think of your dad as moving into a life that is lived more in the present, and in enjoying the distant past, and I would take the chance to encourage him to talk about his childhood--especially those Irish relatives and stories of where they came from. I wish I had done more of that with my mother. One of the last comments she made to me was "I will cherish the wonderful life I've had." I know that some people have very tragic and prolonged periods of suffering with AD, or with their loved one's changes in personality, but my hope is that you and your parents discover that the Bredesen protocol helps, and that walking a path that is uncertain together is an experience of great love.
If I can help at all with the clinical trials search, please either post what the nearest city is for your parents, or Private Message me.
Hugs. Irish girl.