Recently, there was a thread on the loss of friendship with couples after dx. (It seems to be a pretty widespread problem.) It made me think about the additional loss of same-sex friendships as well, which I have also experienced. Part of this is that I'm just tired of always being the one to make the phone call, it feels like the relationship is 90 percent on my shoulders, and I resent it. Of course, this is not the case with all friends, some remain with you through the ordeal, but I'd like to hear from others who have been successful how they have done it. I guess one way would be to schedule a monthly lunch--kind of like scheduling a business meeting--on a set day. I have never done that, social plans have been more spontaneous, but I'm wondering if it would work. Or is it just best to let those friendships go by the wayside?
I've had an on-going "appointment" w/2 friends to meet for coffee at 9:30 Friday mornings at a tourist destination dairy for a long time. When hb could no longer be left alone, they told me to bring him. So, I do. He has coffee and cookies or ice cream and mostly just sits and watches what's going on around him. Sometimes he says something (usually doesn't make sense) and they comment and say short sentences to him. Most of the conversation is just the 3 gals, tho'. Altho' I grew up in this area, I moved when I was 18 and went to college. Moved back after retirement 7 yrs ago; we don't go anyplace w/couples--except family. Behavior in a restaurant is not predictable.
I find that making a lunch date works well. Haven't tried the monthly schedule, and even the lining up of 3 others takes a bit of maneuvering as people have different demands on their time. I belong to a History of Nursing group that sometimes has a lunch at a heritage house with a good speaker, and that is usually a good date to make to include friends.
Well, I joined groups and activities that were mostly women.....water aerobics and Curves. So, I just made new friends......Some of them were married, some widows and then there was me...the widow with an almost living husband. We did things like lunch or go to the movies and from them I met other ladies and now I have a wonderful network of people who I thoroughly enjoy.
Some of my old friends are still in the picture, but I have changed....my life is so different than theirs. They are still married, have husband obligations, need to be home at certain times, and I am as free as a bird. LOL....it just dawned on me that some of them are probably thinking I have it good.....!!!!!!
I never blamed the couples from fading away. It is difficult to deal with the disease when you have to.....my husband's friends tried to keep him active until it became so painful for them that they were bringing him home and the friends would be in tears.
Just put yourself out there.....get someone to give you a break from the daily grind and join a group you would enjoy.
I think that Joan had something on a blog about friends, how they change according to our needs: those we had when we were raising our families, and new friends whose life is now more like ours. Or maybe it was Starling. Where are you, Starling?
It was this one: http://www.thealzheimerspouse.com/socialization.htm I wrote it 3 1/2 years ago, and it still applies. The only caveat I would add is that many people do not have a support group in which to find friends, so they do as Sandi did - join other groups on their own.
I agree with Sandi*. I also am making new friends and expanding my horizons. I also am not the same person I was a few years ago. I am more outgoing now and don't hesitate to mingle with people I don't know. Once you start moving out in the world you will gather new friends to do things with.
I feel like a "bird let out of a cage" with my freedom to come and go as I please. Our local Church put me down on the Christmas Basket list with other widows and shutins. My daughter told them I wouldn't want one because they couldn't "hold me down". I want to be known as a person pursuing the rest of my life with enthusiasm and not mourning what "might have been". I have been given a second chapter of life and I hope my health continues to be good so I can experience many new things and new friends.
That means no disrespect to my husband. We had a wonderful life and raised 3 wonderful children. He died with dignity and we celebrated his life with dignity at final services. Take care all..
Sandi--your advice is good, but for most of us, I think difficult to put into practice while our LO is living at home. I have weekday respite of 4 hours/day; three days the time is taken up by my exercise class and visiting my Dad at his ALF. The other two I use for food shopping, other shopping, errands, doctor's appointments, hair and nail appointments, Alzheimer's advocacy work, lunch with a few old friends, getting the car washed, etc. Some of those days I have to stay home because of workmen coming to fix something in the house or an overload of paperwork that I can tackle uninterrupted if the aide is there. There is simply no time left to join group activities--even with me having more respite time than most caregivers. I think making new friends will have to wait until after, and Lois is a great role model for that...I guess you are saying that losing some of the old friends in this situation is "normal" and just has to be accepted.
Marilyn, I stay in touch with 5 friends from the different places I worked. We agreed that we will schedule 2 lunches a year - 1 in summer, 1 during the holidays. It does take a bit of calendar crunching because the age ranges of the friends are mid 30's to mid 70's and everyones schedules are so varied. But we are committed to maintain contact at least twice a year. I recommend you try to schedule the time and see how it works. Although you will lose the spontaneity of the social lunches, the fact that you are getting out and doing something for yourself. Other than those 5 friends, my network has shrunk to almost nothing. I am considering joining an online bookclub and see how that goes.
One thing I hadn't thought about--my friends are now entering the age range where some are retiring and buying second homes out of state. So even without my husband's illness, I would not be seeing them as often. (Of course, without his illness we would be pursuing our retirement plans as well--to buy a home in a warmer climate--and it wouldn't be as obvious.)
The scheduling of lunches seems to be a good idea--will try that. Something else I have noticed--I have a friend who is in her 80's, a long-time widow. She will call before every major holiday to wish us a good one, it's a nice way to stay in touch. She doesn't send cards, nor does she email, she does it all by phone. There's something to be said for that, I think.
I am trying to maintain a friendship with someone online, but I get tired of her always asking if I am alright. This is what I wrote to myself tonight:
I have had this online friend for a couple years now I think. She keeps asking me if I am alright. Why? Because I get down. A year ago January she introduced me to a lady in MN who had Lyme disease and died in December. We hit off immediately partly because the Lyme Disease had messed up her internal clock so she slept days and was up all night; and she 'got it'. Having a terminal illness she understood what I was going through. When she went in to have her last surgery in October, her last attempt to live, I missed her terribly. I was sending her ecards through the hospital then finally called her. It was such a blessing to speak with someone in person that you loved as you could any dear friend. When she died a hole was left. My Texas friend is nice, she was the one that sent me a Kindle for Christmas so we could play games together that could not be played on the computer like What's the Phrase. She is a blessing but does not 'get it' as hard as she tries.
Tonight she asked me again if I was OK since I was not too chatting. I told her just tired. Truth is, she is not on like she was, so I have not only had to deal with the loss of Bobbie, but the only other one that was a connection to the outside - I am lonely.
Then I told her "I procrastinated today so tomorrow and/or Tuesday I need to get the first of the month bills paid, finish my grocery list, get all the laundry washed, make sure I have quarters for the next three weeks, empty the black water tank on Tuesday, make signs to put up for Art, and ??? Have things supplied so I won't have to worry for 2 weeks". Living in an RV with a small frig and freezer takes more planning.
What I sent her in an email tonight is:
NO I am not alright. You have your husband sit in his chair. Not go to work. He wants you to make all the decisions for him including what to eat. If you don't he may not eat because it is too hard to decide between a P & J sandwich or ham/cheese. If you go out you have to decide for him cause he can't figure out the menu and/or decide.
You have to make a schedule so he will take a shower at least twice a week - this a man who use to hate skipping a day. Remind him on shower day means clean outer cloths (he does change underwear daily thankfully). You make sure he keeps drinking and eating cause he forgets if he has eaten or not.
You do all the shopping including things he use to buy for himself. You have to keep an eye on his clothing because he will not notice when they are wearing out, especially the underwear and T-shirts. You set up his daily medications and make sure he takes them. You listen to him tell you the same things over and over all within minutes of each other. Or ask the same question over and over. It is a toss up which is worse: the repeating or the hours of silence because you have little to talk about.
You watch him get antsy and need to go walking for an hour or two. And because his dad and sister were 'runners' you worry about him even though he promises he won't take off. You have to do all the cooking and cleaning up. You have to do all the house cleaning because he won't.
You watch him sitting in the passenger seat knowing it breaks his heart cause he can't drive but he is good and doesn't complain. You watch him work to find the words for what something is called. You watch him walk 5 miles around the park with no problem but is exhausted just getting dressed - makes no sense and he can't figure out why. I have to just tell him it is part of the disease. You watch him watch his favorite sport - hockey - but have no memory of what he just saw. Same with baseball and football. When he becomes aware the tears come and I have to say 'I know'. At least you enjoy it in the moment and he agrees.
You watch the hurt on your grandkids face when they want to play with Papa and he wants nothing to do with them. Or when he does he gets too rough because he is not aware how tight he is holding them. They know he is sick but that doesn't totally help their pain. He says it was good to see the kids as we leave. He says even though I won't remember they will won't they?
You watch the tears well up in his eyes when he asked who is taking you to the hospital cause he can't. Then the fear in his eyes when he wonders about what will happen to him if something happens to me.
The confusion and 'what do I do' when something goes wrong like last week with the toilet. He does fine putting the awning up and down but there are times when he stands there trying to figure out why it won't go up because he has not done all that needs to be done to roll up. Confusion and frustration when he is turns the TV on them tries to change the channel but ends up changing the TV not the cable box and has no idea how to correct it.
There is no intimacy, no 'I love you'. There is no counseling or medicine to bring it back. He is no longer my husband, but an adult man I have to care for like a child. There is no sharing my fears or anything about my surgery cause he doesn’t understand.
That is him. Then there is the motorhome maintenance I need take care. Remember to empty the holding tanks, check water filters, house cleaning, laundry, shopping, cooking, bill paying, etc. Then my needs which often take the back burner because I am so drained, usually emotionally, to do much about.
Right now the surgery is the big stresser. Making sure everything is taken care of so I won't have to go out for at least 2 weeks. Having all the paperwork in order in case something should happen to me. All the things I normally just do for him is intensified 10 fold.
When I had surgery I in the past I never thought about what would happen to him if I didn't make it. But now I do because he is unable. It is like when you have children and you have to make sure arrangements are made for their care.. And if the test should come back showing the precancer cells are outside the uterus then I need to go to the oncologist in Spokane.
Add to that my own procrastination of where to settle. We like it here and if we stay I need to switch his VA medical to here. I had planned to after his August neuro appt in Portland, but I am second guessing myself with how much ground he has lost the last few months. The doctor sent a prescription of Zoloft for him and it has stopped all the walking in exchange for him sitting and sleeping a lot more.
I need to decide before winter if we will stay another year here in the motorhome or find an apartment. And if it is an apartment where - here or do I move closer to Spokane since that is where I will have to take him for the neurologist. Or, do we go back to the Vancouver area and keep his doctor leaving the grandkids we do see too far away to go visit. Also, Emilee, the grandkids mom, is Art's DPOA if anything should happen to me. Staying in the Richland or Spokane area would be easier for her if that should happen.
And if the test should come back showing the precancer cells are outside the uterus then I need to go to the oncologist in Spokane. If I should have the 'unluck' to fall in the 10% chance the precancer is outside the uterus, then I have to decide whether further treatment or wait it out, let nature take its course. So any plans to move or not move are on hold until after the surgery and lab reports are back.
C, you ask: Am I alright, no I am not. I am exhausted emotionally. I can't wait for this to be over. In the meantime I have to find a way to survive so I can have a life afterwards. A life where the only stress is taking care of me and my life, not his before everything else
In all honesty I woke up this morning at 5:30am on a similar topic. And I've had to learn and am still learning how to cope.
If I apply my own struggles with your post I then demand of myself that I answer in what way my friend CAN ask how I am without making me mad and if I want this then I give my friend that information. This person cannot ask if you are allright. OK. Then what can they ask?
The reason? I can leave them no openings but still feel angry.
And when I displace the thing like posting it but here, then later I'm not certain whether I said it to them or not because I did say it - but on the AS board.
I'll give you the example I suddenly woke up from today. My SIL came up from California to see her family where the brothers are getting older. She only had one day up here even though she has a 75,000 a year travel budget (which she announced some years ago). She held a big family dinner and invited everyone in the family.
Except me. She forgot about me. Not her other two sister in laws. None of the nieces and nephews. Just me. No time to see me as she swept through the nursing home to see her sister five minutes away. No phone call. But, an email of apology expressing regret that she had forgotten that I am family.
I wouldn't have gone. I haven't heard from that crappy family except once a year. Their supportiveness disappeared the instant she went into that nursing home. The real truth is I don't care. I'm not just saying that. It's why I'm answering your post. I've learned how to ask myself honestly and I truly don't care about or think about her family. But I've got my outrage white hot and am playing games inside me.
As I explained to my own sister who laughed hard, I'm furious when I'm not invited so I can turn them down. It took me a long time to learn part of what the disease did was grind me down so much that it was often me standing on their air hose because I have a lot of anger and resentment to get out over here and the only thing I'm sure of is that NOBODY wants to hear it - even me.
I'll tell you something I believe Charlotte. I've felt for a month or two that you are changing. You are stepping out. Tell me to FO but that's what I see. What I mean by that is that I feel I'm watching you happening to it more - rather than it happening to you.
I also believe you are here for a while and are not dying on any operating table soon. This ain't over. Don't give up on the pen pal and don't worry about telling me what's what. But do keep coming.
I don't want her family in my life. I want a family really badly. It's why I woke up stung that the club I would never join, didn't want me as a member.
Thanks Wolf and I would not tell you that one because I don't use that language and two I value the family here.
I have little to do with his family. I did chat on FB with his niece the other day. She never answers emails but she was responding to a comment I made that in a few years she would be a grandma. Turns out she will be in October. I finally was able to find out how her mom is doing. Her mom and I got along. We were not best friends but we could have fun. When we were there in 2006, a year after her diagnoses, on our days off from work we would go get her and bring her back to the campground. A couple days with her repeating was exhausting. Little did I now it would become my future.
I am always torn between keeping distance from my family where each has hurt me one time or another. I was always the odd man out! When we get together it is all talking of the past - not what is currently going on. It will be interesting in August when we get together, maybe for the last time we will all be together (one lives in VA, another in OH). I know I won't be able to spend the time I want there because of hb, but I will see. And I hope they do not have big expectations of our sister who has VaD -whose house we will be at.
I did send her the email last night. I also made sure she knew I did not want to end our friendship, just wanted to truthfully answer her question. We all know majority of people when they ask really do not want the truth.
Last night I was also working on hurt from one of the ladies in the park. I was over at her place and she was telling me and another woman about how she found she still had propane leaking and both bottles were almost empty. She had a friend in the park supposedly fix it. I asked her 'didn't you smell propane?" She snapped back that when she has someone do a job and they say it will be done right, you trust them. Heck, when the propane guy hooked up the big tank last year I went behind him with my nose and soapy water checking every connection. I came back deflated and I think that is why my online friends question got to me so deeply.
Charlotte, You are under such extreme stress with your upcoming surgery and worrying about the outcome, that I am sure your nerves are frazzled. I thought your email to your friend was very forthright. It covered how you feel as well as how you deal with everything. Your regular routine is difficult enough without having to handle all these additional worries. Your friend sounds like a caring person who just doesn't know what to say or do to be of any real consolation. Like you explained to her - in essence she would have to walk in your shoes to really know.
For now, try to stay as positive as possible that all will be ok with your results, and worry about everything else later. Again, I am sending my very best wishes for a successful surgery and test results.
DH came from a large, extended family, and we had a lot of fun with family members in the old days. But many of them have died off, and there is now only one surviving sister out of his original nine siblings. She does keep in touch by phone. (She's 91 years old.) Of his many nieces and nephews, only one niece still keeps in touch. DH had always said that he didn't think his family would be there for me when he was gone…and he is gone, in a way, with this end-stage Alzheimers…and he was right. I don't really care about this, or at least I thought I didn't. But one cousin whom DH was particularly close to has died in New York City--and we were not even notified until a casual friend of mine just happened to see the death notice in the NY Times and shot me a quick email. This one hurts. DH and his cousin were almost like brothers, especially that all three of DH's brothers are long-gone. Couldn't the family out of decency let us know? From the Christmas letter I sent out, they know DH's circumstances and our new address in the Heartland.
Charlotte and Wolf, I am reading your comments with interest. I do think that good friends and family are golden, but for an Alzheimer's spouse, most friends and family are not good, and not golden. When this is all over, if I survive it, I will be very, very selective in who I build relationships with, and I don't think there will be that many. Echoing Moon, best wishes, Charlotte, for a positive outcome to your health issues.