Yes, I know it's Sunday, but I have posted Monday's blog because at this moment, my laptop and the web design software are working. Considering my computer issues and mess, I have no idea if it will be so tomorrow.
I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. My thoughts on friends, Alzheimer's Disease, and how difficult empathy is without experience. Please post comments here. Thank you.
Sorry hit wrong button above. My sisters DH had 3 back surgeries and during one she was pregnant. The surgeries have caused nerve damage in one leg and he loses his balance. I did not realize fully what she has gone through until I was a caregiver myself. Her son got married two weeks ago. There were a lot of stairs to go up and light the unity candle. When she told me her fears of him possibly falling I cried. Our daughter is getting married in May and this hit home for me. I know the challenges that I will have with DH that day. She will be there to help me get through it. Because of both of our situations we have a support system together where we have some understanding of each others day to day challenges. i guess I am saying I too did not see what she was going through until I experienced caregiving as a spouse. I know that I still don't know exactly what she is going through or can she know exactly what I am going through, but we do in a lot of ways. It is sad we have to have this as a bond. We have always been close, only 15 months apart in age. But our shoes are each our own. I hope this made sense.
Isn't it crazy that almost none of us know each other, but feel that we do? I have been reading and sharing this sight for long enough to feel a sense of 'family' when I think of it. Every day I have a need to check it out, see if everyone is OK, and feel that sense of belonging. I don't always remember the plight of each contributor to the blog, but of course can take to heart with what they are experiencing. This always brings us all to the same page, and a closeness that can't even be understood by those not experiencing the life of the Alzheimer's Spouse. Even with the loss of my DH, I still feel the need to check on everyone, and feel that common bond that we all share. Just maybe I can add something to help, or often read something that helps me. I was just sitting here today, needing to share those thoughts, and how important of an anchor this sight has become in my life. No matter what happens in the future, everyone here is automatically an important part. It's sort of a needed Teddy Bear I just have to hug. We are so fortunate we found each other. My hugs to everyone, and my hope that all who come to this sight find the same comfort I have found...............thanks Joan, and everyone.
Yesterday and today have been the toughest for me feeling "trapped" by the 24/7 responsibilities with my husband. I haven't posted on here in months and was going to do so and ask for some comments when I read your post, Joan. A woman I thought was one of my dearest friends - we used to go out to eat and to events with she and her husband and had lots of fun in each others' homes - has totally avoided since my husband has been diagnosed. I have tried to let it go and have decided that my feeling is this... she may find herself having to deal with these issues one day. I pray that she doesn't, but it seems to be in everyone's family.
Thank you for all you do for us, Joan and I send big hugs to each and everyone needing them today.
i have a sister in law whos mother has alzheimers and deals with that another one works with alzheimers pts and think its no problem for me we have been married since we were 18 and 19 so we have always been very close to have him distant except when he groops me is very difficult for me i have very few romantic feelings left for this man and i feel guilty for it s still aware enough to know i feel emotionally divorced he wanted to move here not that it matters for most of my family and friend we had as soon as dementure was mentioned we were history its like i fell alone most of the time even with him with me so im right there with you
My mother-in-law had Alzheimer's. My father-in-law cared for her at home for over five years while she was so medicated for halluinations that she was more like a zombie. We lived only a few blocks away. Looking back, I feel that I was of no help to him and it makes me feel so ashamed for my lack of compassion. I had absolutely no comprehension of what he was going through.
I've only contributed once or twice to the blog. I do however, read it and check the site frequently. It really does seem like family even though I don't know any of you and haven't really contributed. I'm still working but am planning to retire in the fall. So far, my DH is holding his own but I see him slipping every day. I'm lucky to have supportive children but one lives across the country and the other several hours away. I feel the frustration of trying to keep all the balls in the air at work and at home. It is true, we've lost friends too. At first I was mad but as time goes on I'm finding that it's not really important. I think at some point everyone will be dealing with similar situations. I agree that it is different for spouses/partners. It's not easy to walk in anyone's shoes but I think our's are particularly challenging. Hang in there Joan. You provide an outlet for so many....myself included. I want to thank everyone out there for the support and care that they provide.
I am so thankful to have found Joan's. It has been and still is a lifeline for me. My dh died Oct. 2 and I'm sure my friends think I should be moving on. When I read here I see others have been alone much longer and are still trying to adjust. During our journey I learned so much from others who post. Thanks again to all who helped and are still helping me. I don't have anyone where I live who could begin to understand even if they tried.
As always Joan, your topics seem to be just the right timing for me. Your comments are so well said and boy can I ever relate. As others have said, and I have said before, and will again since finding this blog and all of you, you have become a life line. This is such a lonely journey and we all so get it. I too have lost friends through my husband's disease, which of course, is also my disease. My husband went into care one year ago and now I am depressed. Of course I no longer have the horrific 24/7 care however other issues are there. There are real adjustments to make. Friends tell me that since it has been a year, I need to smarten up and move on. Gosh! Talk about lack of insight. Thank you all - everyone is amazing and I am honored with your sharing of stories and support.
I am so grateful for this website. It has helped me in so many ways and I have learned more from visiting here than attending all the support groups and Alz education programs over the years. I recently went back on my fluoxetine because I felt I needed it. it did help me a while back. I am waiting for a room at the assisted living. I am placing him because I do not feel he is getting enough mental stimulation here at home. I am praying that all goes well. At times I think it may be a cop out and maybe it is. All I know is that I am at my wits end and am ready for the next phase in this journey. I so agree with Joan that the issues with spouses are so very different than those of other family members with this disease and that you must experience "doing everything" to really understand the depth of what we do each and every day. When my sister in law comes to visit, she says "he looks so good" and "you are a saint." When she says this I am about ready to vomit. I think that is what we caregivers most need is understanding of what we are going through. Everyone here does understand and that is why this website is so good.
CO2, don't think of placement as a 'cop out'. You have taken good care of your DH for many years and at some point, we have to think of ourselves. As we are often reminded, this disease will surely kill them but it should not kill us too. I hope an opening comes available for you soon so that you can take care of yourself.
CO2--I think the way you phrased it, that you're "ready for the next phase in this journey," captures the truth of our experience of the situation. That, for most people, the 24/7 care for someone who needs much help and cannot emotionally reciprocate is a terribly wearing thing. And if we're alive at all, we long to pry ourselves, somehow, out of the doldrums...even to the extent that we just want the disease to progress, simply because we know there's no other choice, and we need SOMETHING to change.