Stories from Caregivers: Diane from NEW HAMPSHIRE
NH
Diane
FROM NEW HAMPSHIRE
I care for my husband Tom. He was diagnosed with early onset Alzheimers in 2011 . He is now in the advanced stages of Alzheimer's. He is totally dependent on me and his care givers. My biggest complaint is that the care givers are not paid enough for their services. I believe care givers should be paid more if they are doing more extensive care than someone who is just there to babysit and help prepare their meals. My husband is on Medicaid Elder Home Care but because I can't always find an agency who is willing to take Medicaid, I also pay out of pocket every week for his care. Some is paid for by the state but I still end up using my husbands complete social security check for his care every month. The state says that I can have 20 days a year of respite care however there are very few nursing homes who are contracted for medicaid so again I have to private pay. What is the sense of offering services if they can't ever follow through and give us the help we need. Now, a lot of nursing homes require one month stay for respite. That doesn't work either because if I put my husband in for a month, I probably would lose my caretakers that I worked so hard to get. I am dealing with four agencies and it can be difficult at times. Since the caretakers aren't paid when we put our loved ones in respite they need to move on to other clients which makes sense but then I'm stuck starting the process all over again. There has got to be a better way of handling respite care and not forcing someone to put their loved ones in for 30 days. Thank goodness I found a nursing home in this area to take my husband for two weeks during the Christmas Holiday so I could visit my youngest son and his family in California. I was there a week and had a wonderful time but now it's back to reality. Tom doesn't know anyone, he is totally incontinent, needs to be fed and bathed. He sleeps a lot and keeps his eyes closed most of the time. He no longer can hold his own weight when we need to do a transfer. Thank goodness the VA gave us a Hoya lift since my husband is a Vietnam Veteran. You might say to check with VA for respite. Well, I did that too and to no avail. It all depends on availability and it never seems to work out. Picture is of Tom at his day program that he attends 3 times a week. He is being photographed with one of his caretakers.
