PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Sunday, January 26, 2014

An E-Mail to Friends

Dear Susan and David,

Hi. This time of year is usually when PV beckoned. 

Now it's the Lieberman Center at $9,900/month. But after six months we will switch to Medicaid and $60,000 is a small investment for Gregory to be taken care of for the rest of his life! I go to visit almost every day for an hour or two. I have been fixing up his private room so it is a refuge for me, for visitors, and perhaps for him. I know he thinks it looks nice. 

A small freezer/refrigerator combo in black, a black chest of drawers for "kitchen" storage, a small flat screen TV (large ones in pubic spaces,) two nice sturdy chairs, one matching ottoman; a desk running under the window with a plant, framed photos, a coffee table picture book on a tilted stand, a cup with a few pencils and his reading glasses (not sure he knows to use them;) a bed side table (with locking top drawer for me to keep things private,) a dresser, an armoire, a large closet, paintings that Gregory has done on the walls. The bathroom is tucked in as well but a shared shower (since supervisions is needed) is down the hall. 

Yes, I am on an emotional roller coaster. When attending to business I am OK but during the still hours of the night I miss him with my tears. Sometimes visiting him at the Center is OK, other time very difficult. I have compared it to being in a "Fellini  Movie" without any back ground music! I have found that many people do not know Fellini so I have attached a clip. 

The most difficult part is that in daily life it is as though he is dead; the condo is quiet, everything is mine, he will never be here again to share the love we created it with, I sleep alone instead of drifting off together while holding hands. I didn't expect to grow old by myself and that makes me sad as well. I try not to think of what "old age" will be like for me or for Gregory for that matter. Not pretty and certainly no future in it!

On the other hand in my new role as Secondary Care Giver, my life is a lot less stressful, the work load is reduced, and at times "out of sight out of mind." I can get dressed for one, not two. I can clean up after one, not two. etc. I can travel again and continue to enjoy theater, opera, etc. I'll have more time to write and to be creative. Maybe I can be a supernumerary at the Opera again, I have missed that a lot. Who knows what lies ahead but it does feel like there are many doors waiting to be opened.

His family has always been, and continues to be supportive of everything I do and all of my decisions. They go out of their way to let me know they are here for me and to feel loved. I love them dearly as well.

In many ways, this whole experience  of Gregory's being at a memory care center is surreal much, as I said, like a Fellini movie. The stages of Alzheimer's while Gregory was at home were gradual and in a familiar environment. I worked diligently to keep him safe, happy, content, occupied and that worked well up until the last couple of months. We still ate out and attended theater etc but it got more and more difficult.

In the end, I lost my patience with Gregory less and less as it became more and more obvious that he did not have the abilities/skills any longer. His behavior no longer looked bad or selfish or thoughtless (even thought I knew it never was meant ... it looked like it was and was able to trigger old responses. These were quickly stopped with apologies quickly in hand.)

All along, I have continued to develop myself as a person with a life and interests but most of my thoughts and time were with Gregory. Now I have a lot of time on my hands and a life to redefine. I am grateful for so many things and my heart is happy that Gregory is being well taken care of. All for now, as always,


P.S. This e-mail was written for you two but I will turn it into a BLOG.

1 comment:

  1. So, about those two nice sturdy chairs..... vintage Lieberman, right?


Comments are always welcome. You are appreciated! If you do not have a sign-in on any of the accounts below ... use ANONYMOUS. All comments are moderated and will appear as appropriate. Thanks. Please, keep commenting!