Today's blog is Part II of one I wrote in March, which addresses the idea that the emotional issues involved in caring for a spouse with AD are completely different than those involved in caring for parent. I invite you to log onto the home page - www.thealzheimerspouse.com- and read the blog. Actually, I have posted both of them, because I think the winds have shifted and changed a bit since March in the public's understanding of AD and marriage.
Please post comments here. Thank you. Reminder - You may need to "refresh" the page to see the blog - click the two squiggly arrows to the right of the address bar.
I've just read the two blogs. I'm not sure I've been here long enough to have read the first one when it was new.
I definitely agree with everything you wrote Joan. The pain of caregiving is there no matter who you are caring for, but the emotional distress is DIFFERENT when it is a parent or grandparent and when it is a spouse. If nothing else, when it is a parent you can go home to your spouse (boyfriend, siblings, etc.) and make the decisions that have to be made together. Your support system is in place. With a lot of us, there is no support system. It is the support system that is sick.
That is what makes this site so very different. Once we limp in here, we are no longer alone. And all you need to see to know that is take a look at the first post and the most recent post of almost anyone who has been here for only a week or two. Night and day.
Which brings me to the following: If you are lurking, POST. It really does make a difference here if you allow yourself to write as well as read. That isn't true in all forums, but it is true here.
My sister's husband recently died of cancer. He was mentally affected by the chemo and radiation (the word chemo-brain really does exist for a reason). She and I would often compare notes on what we were seeing. There were a lot of similarities and a lot of differences. The one thing that came through for both of us goes along with Starling's comment. Who do you go to when the person you would normally go to is the one with the problem?
The loss of the support that the other half would have given under normal conditions is one of the biggest and ongoing adjustments. The loss of what the other person did around the home that we now have to also take care of in addition to their care is often overwhelming.
In spite of that, it is usually the little losses that get me the most. I am getting a couple of kittens this week (due to above sister). The loss that hit me with that, is my husband always named our animals. It was part of how I included him in the process of bringing a pet into the household. He can no longer do that with me.
So, thank you Joan for setting up this site that lets us talk about the losses small and large and verbalize (write) what is going on in our heads.
AD came into my life years before there were meds, message boards and anyone who understood. I did go to a support group for spouses, mostly wives, an occasional husband. But I didn't stay long, I just kept hearing the same things over and over, plowing the same ground. I think the group was good, many had been there for years, it was me--I wasn't ready. I got a computer and began to research. So many, even some docs, did not seem to grasp the situation. It was so easy to tell me to have him do puzzles, give him this supplement or get him magazine subscriptions. I was lucky to have my son & DIL around, my daughter who let me talk & understood, but he was their father, I could only say so much & they were hurting as well. I had sisters & other close people, but they had their own problems and really didn't see anything all that wrong. And, to be honest, for many years I could not talk about it anyway, it was too raw, too intimate, just too hard and much easier to keep to myself. I really didn't feel all that alone, my nature is to be a loner anyway, but I did miss HIM. He was the one I wanted to hug me, he was the one I wanted to tell about my fears & frustrations, and, of course, that was impossible.
Message boards I visited were mostly about parents, just the occasional spouse, but it made me think about the parental loss which I hadn't thought about before--broadened my view of the disease. My sweet love is long gone now but I can give opinions objectively now, w/out the personal emotions. I wish I'd known as much at the time, but I didn't, I learned much much more after the fact. Now I see things that I did 'wrong,' nothing all that major, but just not truly understanding what was happening to him, learning that I could not always control things--and neither could he. Profound life changes not easy to accept and employ, foreign territoroy for most of us.
Accolades have been heaped on Joan, and she deserves all of them. But for those of you going thru this now, this web site is a blessing beyond measure.
I think one of the most painful aspects of being a spouse to a Alzheimers sufferer is the isolation. during the first years of my husbands illness, I had no one to whom I felt I could confide, certainly not my children as Bettyhere has said....too intimate and certainly not something I wanted to burden them with, he is their father not their lover. It was not the fact I was alone, but I had no one to be part of myself any longer, no one to share my life with. Also during the time he was at home, our friends did not visit or invite us to share dinner with them even though he could manage that. It was as though my DH and I both had a terrible disease that they might catch. I found that ALzheimers is a disease that not only does the sufferer have but the spouse is a recepient of the effects also.
Once my sweetheart had to be placed in a nursing home gradually our friends began to include me again in their lives. In the interim I became close friendds with a widow acquaintence in my church and we now do many activities together and I can confide in her . I now only feel isolated sometimes because of the uniqueness of our long, long, grieving for a life with our spouse that is gone forever.
My DH works out of town during the week. Every time I talk with DH, he asks if anyone has called me. I talk with our two children every day and they keep close tabs on me, but I do not hear from my family or his on a regular basis. This really bugs him. this is also something that I can't "fog" over either because he checks the caller ID for the calls. He has asked me not to delete calls from his mother and brother, if they call. I do delete calls on the ID from "800" numbers and wrong numbers. He is really on top of his game and knows if I am not telling the truth. That's what makes it especially hard with FTD, they still have their short term memory for the most part and they still have their sensibility, although they have lost their reasoning. (may be sensibility isn't a good word, but I don't know what word to use. I am trying to say that they have not lost their ability to think through things, just their ability to apply reasoning to what they are thinking.)
I don't know how I could go back to friends who ignored me during this time. I won't have to find out though because we are our own best friends and haven't had a group of friends that we hang with. That is one thing that we have in common, we both tended to be loners in our early life. We also have done everything together.