Stories from Caregivers: Pamela from NEW HAMPSHIRE
NH
Pamela
FROM NEW HAMPSHIRE
Hello: My name is Pam. I am 61 years old and my husband is 67. About a year ago I started noticing some differences in my husband that was not normal for him. We have been married 37 years so I sure can tell. Ultimately he was diagnosed with Alzheimer's Dementia. It is very difficult and stressful to watch the person you thought you were going to share your life with, your senior life, slowly and consistently disappear. Needless to say it has progressed to the point that I had to become his full time caregiver. I had to become his guardian. This is something that was devastating to me and to him when he does remember on occasion. My heart breaks everyday when I have to help him with routine things and constantly have to repeat, answer or tell him how to do things over and over again. The worst part is that I have lost my partner in life which I did not think would happen. He may be here physically but his mind is always on the past. This is the hardest thing I have ever had to deal with and being disabled myself, it makes it doubly hard. I have come to realize that I need to advocate for myself. I am realizing, a little too slowly perhaps, that I need to take care of myself in order to take care of someone else. I love him though and I will continue to do all I can to give him a good quality of life for whatever time he has left. Now enter my son. He is 34. He is disabled. He is on the Autism scale which prevents him, along with other disabilities, from living alone or going out and doing something like work. He cannot be in a large crowd, or even sometimes in a small crowd. I was designated by a judge to be his payee. Now I have the added responsibility of his well-being and finances! Now there are several reason's why my health is suffering. Yes, it is partly because of my responsibilities which have more then doubled since not only do I have to take care of my husband's needs, physical, medical etc..I have the added responsibility of taking care of the finances and all that entails by myself. I cannot ask his opinion. I cannot ask him to take care of paying the bills. I can't even ask him what to buy for groceries!! Most times he doesn't even remember what he had for dinner or even if he had dinner. Let's not forget the other stuff like helping with the laundry, any housework and absolutely no way can I ask him to cook! Right now he is limited to using the toaster (frozen waffles are his favorite right now, but that could change) and the microwave to make his many cups of tea. Now the question is, "Where did I go?" The answer..my mother would always use the expression ' to hell in a hand basket ', and it applies here. I am diabetic, I had a heart attack at the age of 42 which required heart surgery and left me with some heart issues, I have fibromyalgia & asthma, just to name a few. I cannot afford the co-pays, I very often can not afford medications and have gone without, not a good thing. I sometimes had to not get my meds so that he could get his meds. Insurance definitely helps, I would be completely doomed without it, BUT, they do not cover all his meds or what happens a lot is that the meds are on a higher tier which drastically changes the co-pays and deductibles most especially his Alzheimer ones. He's had to go without at times. He had one medication that had such a high co-pay even after the insurance, that I had to go "begging" at his Doctor's office for samples because he has A-Fib and it is important. All of this affects not only him but me also!! The worry, the stress, the depression and yes sometimes loneliness have all taken a major toll on my health. None of this should happen!! Thank you for listening. Pam H.
