I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about friendship. I would like to hear your opinions. Please post them here.
I think, that the reason you may be able to feel this way now, is you have had time to rest and re charge, at least a bit. When we are so over tired, and you especially who took care of TWO people, HOW can you think of anyone else? You can barely get through the day.
This does not mean that those friends did not have their problems, or need you, but that you may not have had an ounce of anything left for anyone else. Perhaps I should substitute ME for you in these statements. Since Dado's placement , I have been able to listen more, to talk about OTHER things, and to let some of my anger go.
I will never forget the very few who saw my desperate situation when he was home with me, and to recognize it was almost too much. And I am kind of saddened that the old Patty in many ways is now gone, yes I am more caring of others in need, and proud of myself, but I wonder if I will ever feel the joy of life again, so much of it is simply gone. My flowers, my pets, and nature keep me sane, and knowing I need to be there for my Mom in this time. Otherwise it is mostly sad and mundane.
its pretty hard to manage to be a listening comforting friend to others with so much on our plates ourselves. but yes, we should not forget how to be a friend. but in my case I was willing to only be a friend to those who extended their hand in friendship while I was in the throws of my own turmoil. sorry, but a lot of our friends have their own issues yes, but in the scheme of things they are usually very mundane and rather trivial in my opinion after the issues we deal with. I mean a friend who calls to complain they had to cancel their travel plans for x reason is not necessarily something I consider having to listen to when I just had 2hrs worth of cleaning up poo stained carpets. I mean honestly, these folks don't have a clue (just like we used to do) whats important anymore. and none of them want to listen to the harsh reality of being an alzheimers spouse. a good friend will allow us to rant then nicely say we need to talk about something that makes us smile. at least I hope it would be like that. I don't think I will ever be able to listen to the trivial things that people think are important again. when we live death everyday on many levels, everything just has a whole different outlook. I think that's why we tend to lean towards friendsships after that understand this new turn of thinking. divvi
I think the fact that the course of this disease takes so long is a factor in the loss of friendships. This is grueling, long term hardship. Hardly ever a good day and no good news when anyone asks. So only the best of friendship are able to hang on. If we keep a friend to the end, we know they are a keeper :) And I hope at the end of all this, I am a better friend too.
I placed my husband in August and have been focusing solely on taking care of me along with visiting him. My friendships have totally changed with this horrible disease and now I find I just need quiet and not a lot of socializing, when the loneliness flares I head over to one of my daughter in laws and just talk and listen to them. Just not having the constant interruptions along with the tv blaring all the time is such a relief. The friends I have now are almost all related to alz and have either lost their spouses or have them placed. I almost feel as though the quiet house is like healing balm on my soul. Until I placed him I had no idea how busy I was with his care.
I feel the same way you do, CO2. It's only three weeks since I placed my husband. People I thought were friends who weren't around much when I had him at home are now calling and asking me to do things. It's going to take me a while longer to get enough rest and relaxation to be able to socialize much. It is nice to just be at home alone.
There is no way I can be a good friend to people anymore. As others have posted here, the Alzheimer's responsibilities are just too draining, and there is just no way to be "there" very much for other people. Fortunately I have a good extended family nearby for a certain amount of socialization, and I see my grandchildren every day, but it is still hard, as anyone on this forum knows. After my husband goes, it will take awhile. I agree with those who say the relief from the blaring TV and all the interruptions--and poop patrol especially--will be a healing balm. Sometimes I just think a quiet, contemplative, simple life without constant care responsibilities would be a blessing. I look forward to that someday.
my DH has been in LTC for a month now and I don't get any phone calls or invites out and I really was lonesome and felt so sad at the loss of DH and the family, but now I am finding that I just want to be quiet. I have to travel 78 km each way to visit him and when I get home I am just so tired. He demands every moment of my visit and has to tell me about every thing that has happened and he has done since I was there last. I am sleeping well and eating better. I just have no energy or time right now. Maybe in the future but he is a long way from end stage so I see lots of energy spent on him.I expect that they will have a very difficult time with him as this disease progresses and this will take up my time. Right now I just want quiet and to find the real me. No football or hockey here. So nice and quiet, but sad.
Jazzy's comment about finding "the real me" is so relevant to people buried under caregiving. I sometimes feel as though I don't really exist anymore. Everything is about him, and meeting his needs--giving up everything that makes me a person, just in order that he be cared for. It is the right thing to do--I would never Not see that his needs were met--but I am just disappearing into this invisible, misty, sort-of-not-there entity, like in a scary science fiction movie. I work on my writing and music at home, but there is no way I can give it the focus and concentration that I should. Alzheimers just sucks the life out of the person who is the caregiver--you end up invisible and just existing, not really living.
I too have lost friends who have the time to meet for lunches, go on shopping outings together, etc, etc and have absolutely no comprehension of what it is like to know that you can't just jump in the car and spend hours shopping. But I have tried to reach out when I can by mailing someone a birthday card, sympathy card or just a note with a picture of our grandson in it. That is one way to still reach out while being at home.
Elizabeth, you are right - there are so many times I feel like I don't matter any more - that sounds selfish, but it's not. When you give 24/7 to your Alzheimer's spouse it does drain the life out of you. I think we are still a ways from LTC, although I have put a deposit down at the facility near our home so that we are definitely on the waiting list. As our neurologist put it when she encouraged me to identify a LTC facility, "One day they can fool others into thinking they are fine and the next day they fall off a cliff". Still it would just be so wonderful to sit in a chair on the beach with a stack of good books to read and just rest.
Thanks to you all for caring, especially to you Joan for being so open and willing to share your heart through all of the struggles.
Even with my wife in an ALF I find that I can't plan ahead, I don't know what demands I will need to meet. My brother is visiting from across the country, I saw him this weekend but can't commit to seeing him Saturday. At least he understands.
After DW was admitted to Home Hospice several weeks ago I feel like my reading of Joan's blog was a replay of these first weeks as more and more friends and relatives became aware of the fact that the end is approaching
"It was the nightly and weekly phone calls from the old friends in NY and our newer friends here in Florida, that pulled me through. They called to find out how I was doing." At one point last weekend while watching the Denver Cowboys game I felt like setting up my answering machine with the message, "we're doing OK, I'm watching football and will call you back" Daughter's repeatedly volunteer to be here on the next flight, I feel their obligations at the moment can best be served by being with their children. #1 Grandson trying to make a decision on early acceptance to college. He was selected All State soccer team last year and a number of schools are pursuing him. #2 Grandson a Jr. All State basketball player just getting the season started. # 1 Granddaughter selected to Westchester Cty, NY High School Orchestra and #2 Granddaughter a state ranked volleyball player and finished NY state scholastic testing in the top 3% in math and English state wide. No need to disrupt these beautiful lives!
Between Hospice personnel and friends dropping in I feel almost overwhelmed and intruded upon at times. Typical day Monday, Hospice nurse arrives with 3 lovely trainee's. DW's facial expression and defensive posture makes it very clear to me that she's getting a little fed up with people poking and probing, asking her to perform tasks she's incapable of doing, and talking about her as if she didn't exist. I took the nurse and caseworker aside explained that it was necessary terminate the training session immediately.
Next a phone call from friends who live in Jupiter Island just 30 min North of us. . They had been in Europe on vacation and were returning on a repositioning cruise from Europe to Miami. They called as soon as they got within Cell phone range "Can we stop by on the way up? A wonderful visit, we've been friends for more than 25 yrs. He's an ER Doc. she Spec Ed Psych teacher. They provided great therapy for me!! He and I are having lunch today while his wife stays with DW.
As they're departing a knock on the door. A pizza delivery man with a pie and hero's. Phone rings it's a neighbor, "Explaining I came into to they building when your company was signing in at the front desk. I saw your lights weren't on in the dining room so I took care of that problem. Enjoy the pie and subs or throw it in the freezer. Now, just while typing this post a neighbor just stopped by "going to Publix, need anything?"
Nearly every day it's a drop in visit and phone calls. Those who "haven't been there" or are working through their own problems over these past 7 years are few and far between and I have no expectations they been forgotten long ago with the thought: "I forgive you the error of your ways and pray you have the strength to overcome your own issues." I certainly have no time or energy to waste on hard feelings or disappointment in others. My philosophy has always been; I never anticipated receiving much help being far from family and friend base which makes each contribution so much more a pleasant and meaningful surprise
Unless somebody has experience with the type of life a AD caregiver lives (i.e., up close and personal), we can't expect them to have any understanding of the daily, unrelenting demands of our caregiving lives. And the isolation it imposes upon us. Death and dying are uncomfortable for our culture and we don't know how to face those who are stuck in that reality. If we're lucky (and it seems like many of us are), some very good, brave souls are there throughout for us and the ones who are uncomfortable come back when their comfort level returns. I don't think there's a lack of empathy, I think it's a sense of inability to provide anything positive to the situation. Or, they simply have their own "stuff" going on. At least that's my take on the picture.