Johnny2Toes' Blog

Living with Alzheimers, Thoughts, Rants, Raves

At least for now . . .

For those of you who have read the tale of our journey with Alzheimer’s Disease, it affected my father. After a lengthy battle with this disease, he succumbed. I won’t go into all of the details, but his behavior followed what is classically written about on so many sites and in so many different publications. There can be varying degrees of the behavioral patterns associated with the different stages of Alzheimer’s, but the end is usually the same.

I have an uncle who has been diagnosed with Alzheimer’s and has been living with it now for 4 or 5 years. Aside from his disease, he is in excellent health. He still has great long term memory, but his short term memory is almost non-existent. An example of this is that when we visit he immediately recognizes us and we spend many fun and fine times with him. A few minutes after we leave his house, he forgets we were there.

Another part of this story that I haven’t written about is that about the time my father was diagnosed with Alzheimer’s Disease, my mother was diagnosed with Frontotemporal Dementia, or FTD. There is an excellent article about FTD from Johns Hopkins Medical which you can find here. I’m not an authority on the subject so I won’t try to explain it all. You can read this excellent article for yourself, just follow the link.

Mom held it together long enough to be able to help and care for my father until the end. The last month or so of his life, I was there with him 24/7. I can’t bare to write all the details, suffice it to say that it was one of the worst experiences of my life. That said, I wouldn’t trade those last days for all the money in the world. It was a humbling experience to provide care and comfort to my father, the man who did so much for me through all the days of my life. I will truly cherish those last days till the end of my days.

Soon after my father passed, my mothers disease progressed at a fast pace. Agitation was the first major symptom followed by short term memory loss. It got to the point where she was forgetting how to cook for herself. Her driving skills deteriorated as well, and we were forced to keep her from driving for her own protection. It was at this point when my mother was placed in hospice care.

Over the next few months, her condition continued to deteriorate and she was becoming less and less able to function. My sister and I were by her side continuously in the last week of her life, and we were there when she passed. She did it her way, in her own house, in her own bed, with her children by her side. I can’t describe the emotions we went through, but I can tell you this, she was at peace and pain free. What more can anyone ask. As with my father, I wouldn’t trade those last days for all the money in the world. A man cannot ask for a better gift than to have the honor and privilege of caring for his parents till the end.

When I first started writing about Alzheimer’s, I had planned to document the journey but I came to realize that I just couldn’t do it. The ups, the downs, good times and bad times, all are too personal to me to write about in this venue. Perhaps in the future I’ll write more, but not just yet, it’s still too raw and personal.

In closing, I would like to say a few words about Hospice. We were fortunate to have a hospice team that was beyond praise. The provider we engaged for my mother was the same one we hired for my father. This was a group of professionals, a team really, who far exceeded anything we expected. From the medical director to the nurses and CNA’s, we couldn’t have wished for a better team. This team along with the social worker and religious advisor were definitely a step above. They worked seamlessly in concert with us, and each other. Their love, compassion, knowledge and skills were phenomenal. I would give them a plug but I don’t have their permission, nor have I asked.

I will tell you this, I was ignorant of just what a hospice team is capable of. I had this very shameful idea that hospice was there medicate a patient till the end of life. I saw it as a kind of warehousing. This could not be further form the truth. This team of professionals is highly trained and they show an abundance of love and compassion for those under their care. Not only for the patient, but for the family as well. They laughed with us, they cried with us, they kept us informed all along the journey. The nurses didn’t pull any punches nor feed us sugar coated words. The CNA staff were able to provide a level of comfort care to our parents that was extraordinary in every respect.

With all my heart I pray that no one will be in need of a hospice team, but if you find yourself in that circumstance, be assured that your loved one will be very well cared for. Honestly, I don’t know how we as a family would have been able to cope with the various situations we were in. The hospice folks were such a blessing. These are a group of professionals who do what they do not just for a paycheck, but more importantly, they have a very real desire to help when help is needed most.

Thank you my friends for taking the time to read this article. I would appreciate your thoughts or comments.

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