Sandi from North Dakota
Greg, now 59, has Early Age Onset Alzheimers Disease (dx age 54). Samantha(daughter) and I provide 24/7 care within our home. I have already downsized to a townhouse to afford mortgage. I am able to work 20 hours/wk as a Faith Community Nurse providing care for many others along the way, and she does evenings on weekends. We do all the tasks for him: unable to do own ADL's without guidance, needs constant supervision, unable to speak at times, to do meal prep or anything else. He was a statistician. I have had to relearn all the finances, do all the living chores for our family. We strive to keep him safe and happy. I am challenged with lack of sleep, lack of support, lack of finances and more. I experience feelings of anger and sadness over what this disease is doing to him, our daughters and me. There is a lack of assistance of any kind readily available for those younger than 65 years with this disease. The Alzheimer's Assn does try, but the situations faced are different at age 59 than age 89. Some facilities in the area when contacted are not interested as not in the Medicare program. I'm not sure that I can hold on that long! I work on the day I have to survive. For those within the state: there is a program called Powerful Tools for Caregivers available--for any diagnosis and strongly urge you to check into this class. Check out NDSU Extension for information on the course. There are common things that all who provide care for others need to know and this is a great resource available. If you know someone who has Alzheimer's Disease, who is the caregiver of that loved one....stay their friend! It may be hard to do a visit with the person with the disease, but the caregiver really does need YOU. Having someone to talk with is so incredibly missed and so vital to survival. If you are able, offer to prepare a meal and just drop it off, give a call later in the evening to check in, mow the lawn, take the car in to have oil checked, send cards! This is a lonely disease for all of us. Stoicism is strong here, and none of us like to feel helpless so its hard to ask or accept help. Do it anyway! The best part: we celebrate an 'ah-hah' moment each day. It might be he said the dogs name, recognized the Beverly Hillbillies theme song, smiled, said 2 sentences, eyes are bright and he is with us for that moment of time. That's when we can remember that he is 'in there' still. We are still able to show him our love and respect. Unfortunately--he can't reciprocate. God's blessings to all caregivers out there!