Several years ago, I started shopping at a small women's clothing boutique that is close to the center where my husband attended daycare. I would visit every couple of weeks and buy something as a "pick me up" to alleviate some of the sadness. Of course, I got to know the owners well; by coincidence one of them had gone to junior high school with Steve.
Last summer, Steve was in the geripsych unit for an extended stay; at the same time, the owner's husband was being treated for a serious disease. He recovered and as far as I know, has remained well. Yesterday, when I went into the store, she told me she had been thinking of me. His illness has reoccurred and I suppose things don't look good. She told me that I am her hero, and thinking about how I deal with Steve's illness has comforted her. My close friends have told me the same thing, but it was quite something to hear it from someone I don't know that well. It reminded me that people are always watching how we handle this challenging situation we've landed in. From my perspective, I'm just trying to get through it with the least damage to all concerned. It is interesting to hear the impressions that others get from our interaction with them.
marilyn, you are right, people are watching how we handle this. The people at church are always telling me what a great job I am doing. I guide him up to the alter for communion, I always get him a snack after church, I pretty much know where he is at all times. BUT we are both on our best behavior. If I even think he is going to have a bad day we don't go to church. It's not that I want to give my church family the wrong impression, I just don't really want them to see how bad it can get. For me that would serve no purpose.
Marilyn, you are right people are watching even if some of them choose not to get involved, they are watching.
I marvel at how you've handled this journey with understanding, poise and dignity for both of you and how you've handled all the unexpected changes with grace. You and others on this site are inspirations to me and have shown me that it is possible to deal with this disease with compassion, respect and dignity,no matter how challenging. You are also a wonderful role model on how to be the best caregiver possible yet recapture "you" when the time comes. I think you are a remarkable woman.
this is very true marilyn. people are watching although many chose not to help but they do notice. i agree with LFL that you have been a most determined and knowledgable on handling steves ever changing precarious dispositions. it finally worked out for you both and your stamina and hard work and good decisions has paid off.
i saw a dr friend today and we spoke of DH and he was marveled that DH is still with us after so very long. he knows the story of diagnosis from the first and has followed our journey from afar thru other relatives. his mother had AD as well so he knows the ropes. his praise and acknowlegement of the years of dedicated caregiving gave me inspiration.
LFL, you make me blush with all your words of praise. I would say the same things about you as well, and certainly also Divvi, who has had one of the longest runs of caregiving on this site. I agree, Divvi, that it would be great if more people offered help; but at least, a kind word of praise gives us a much-needed boost as the years wear on and we're still at it!
divvi, I don't know how you've had the stamina for your very long journey-I'm not sure I'm up to it! You, marilyn and others have taught me so much-now if only I can learn patience. And divvi, I could never be the poop queen or even the poop princess (coco). I truly feel blessed to have you in my life.
I am glad you brought up the poop royalty LFL, I needed to have a bit of a giggle. You and I I are the same age, well close. I will be 58 in March. Our husbands are the same age too., though mine was diagnosed Dec. 2010. I am sure, he had it coming on for at least a year before that.
An employee at the care center where my hb lived, and I visited everyday for 6 months, phoned. A woman who is in the memory unit where hb was has "taken a turn for the worse." I believe she's been there for a few years. Her husband came often to visit while I was there. We spoke, but didn't have any real conversations because we were each with our spouse. Employee said the hb isn't taking the worsening dementia and health well; may be in denial. Staff have tried many things to engage him and help him. Employee said I seemed to have done so well would I give permission for her to give my phone # to the hb and tell him I might be able to be an encouragement. I don't really know how I could help him. Each of us brings our unique personalities, experiences, methods of dealing with various issues, etc., etc. to the table of spouses illness. Our spousal relationships are different, too. So, all day I've been thinking and praying how I might be of help if he calls. (My gut says he won't.) Just another example of people observing others and maybe only seeing the surface--what we want to "show."
Sure, Zibby, no one knows the private hell that each one of us endures. However, I can say from my support group experiences that some caregivers appear to be hanging by a thread (constantly) from day one. I have wondered--if this is the way they appear in public, how must they be when they let their hair down? (Maybe there's no difference.) Ironically, one of the most extreme cases I have seen--a woman whose husband died from FTD--now conducts recreational activities as a volunteer at Steve's ALF. I would never have guessed that she'd continue to be involved in the dementia community "after" -- the "during" appeared to be so extremely stressful that she seemed ready to crack as an ongoing thing. I give her a huge amount of credit for hanging in there and realize that the volunteer work must be helping her heal.
I apologize to "Tex." See my post of 1 day ago. The referenced spouse called this a.m.. We had a nice visit and he "knows" what to do: take care of himself; don't sit home by himself all day; get out and do things. Said his sisters have told him this, but it's hard. He's been a hardworking millwright; now the blessed, looked-for retirement isn't what was planned. (Hello---have we heard this before?) I couldn't really tell him anything he doesn't already know, it's just putting it all into practice. He doesn't use a computer or he could enjoy your friendship, too.