My question is, why does it have to be all or nothing? The group of friends doesn't have to invite the caregiver to all the lunches, shopping trips, golf games, ladies' only events (the caregiver wouldn't be able to attend them all anyway because of her responsibilities). However, I find it very sad that these women who apparently have lives of leisure cannot find the compassion to include the caregiver in their activities AT ALL. So what if they find it depressing--they are not true friends nor good people--they need to GROW UP. No one knows the future, they could soon find themselves in a similar situation. (As you can tell, this hit a nerve with me!) My husband has one friend that I would put in this same category, and my opinion of him is not for publication. I guess this is how the term "fair weather friend" got started.
It is interesting to me how with other diseases, like cancer, friends seem to rally around the person with the disease. With Alzheimer's that is not the case. I think one of the reasons is that there is no hope. Nothing to really fight for.
I think it's because the mind goes and communicating with the person with dementia becomes difficult. The person is wearing the same body, but the friends find it difficult to relate to the mind. With diseases like cancer, the mind is still there and communication is a lot like it always has been. Let's face it, it is hard to watch someone deteriorate, particularly when it is the mind and the person you knew seems to disappear.
Shannon, I think you're right. They see it destroying the Alzheimer's patient, and they see that their friend is also being damaged at the same time. Fair weather friends become apparent, but even those who are supportive run out of energy and patience with the relentness of it all. We do, too, but we're stuck with it and somehow have to keep going because we're in for the long haul.
Here is another twist on this topic..my Dh has friends who do not call or come round as often. It will be my DH who will come up with an idea that " we have not gone gold panning in some time "and he may get on the phone and call one of them to get the ball rolling..In fact this is what they did yesterday. Now these pals don't really like to go gold panning even though sometimes they will suggest it. They enjoy each others company and tell stories and laugh and have a picnic and a good time. What got my goat today was getting to the end of the driveway to find that the truck was nearly out of gas! Not to mention that the truck was do dirty....these clowns have always gone in my DH's truck and he never let the contribute to the gas or car clean up because " he was going anyway." But over this past year in particular, they do know what is going on and still never offer to clean the car or get it filled on the way home which make 2 more jobs for guess who?Dh does not drive one of the guys will. I think I am about to put the kabash on this...they can start to take their trucks..think I will tell them they are not covered on our ins. if they drive and get in an accident..
As to the rest of the topic...we all get it the being left out more and more by our normal friends.Heck, not only do they not invite some of us out for a lunch ( or say something like " we should get out for a lunch" but don't really mean it) they don't even call just for a chat.
And a third twist is that some of the friends still expect us to do the traveling to see them! I refuse.
This is so hard. I still work part time at the same place where my DH worked. Almost every day someone asks "how is DH doing". At first I would say fine, now I say "he's doing..." And if it someone who worked closely with DH, I say "why don't you give him a call or send an email". Only one person asks about me. But she is a retired nurse and worked with older people so she saw first hand what this can do to a caregiver.
I have noticed that people have stopped asking how DH is. It all depends on who does ask as to what my response is. I asked a friend of mine in a similar situation if people really wanted to know the truth when they ask how DH is & she said not really. So now usually I just say, he's doing as well as can be expected.
Mimi, before you give up all of the trips your husband is included in, call one of the guys, thank him for taking your husband out because it makes him so happy and gives you some time for yourself, and ask him to make sure the tank is filled before they come home because your husband no longer can do that.
My own experience is that if I ask for help, I get help. I know it just makes the whole thing harder, but I also always said thank you when they did something for my husband because it got it into their heads to KEEP DOING IT. And also the more I said thank you the more they realized that they really were doing something useful for both of us. A lot of people don't help because they don't know how to help.
Joang, thanks for a very informative blog. Did you write the essay? Just to put myself in the other person's shoes for minute, I have a young friend (son of my youngest son) who is married to a troubled woman, and they have children together. Since her troubles don't change, there does come a point when I get supersaturated hearing about them, because there is nothing I can do or say that will change the situation, and I feel burdened down with my own problems. As soon as I wrote that, I realize that I do change the situation by giving him a safe place to tell me how he is feeling, and that is invaluable for him. And, more thoughts coming, he does the same for me. Wish we lived in the same area and saw each other more often. Conclusion, such a friend is rare and we treasure them, as they must treasure us.
There's one couple that we went out with quite often. They have never gone to see Jean in the NH. She said that they can't"do" nursing homes. Yes, it hurts me a lot but I don't say anything. And, depending on my mood, when some people ask how he is, sometimes I say" Why don't you go over and see him". They don't answer. He's only 10 minute away. I've had people I didn't expect, to go over and visit with him. I've always told them how much I appreciated that.
No, I did not write the essay. It's anonymous as far as I know. I will put that at the bottom of it, so there is no confusion.
Lately, I have tried to be very aware of what I say in the company of non Alzheimer people. When asked how Sid is doing, I either say, "Same" or "Good days and bad days." If we are having an extended conversation, I try to talk about something else.
People are who they are, and we really cannot change them. My attitude now is - if they are there for me, fine. I will remember and appreciate them. If they are not, fine. I will move on. I have to save my energy for caring for Sid and my father. I can't expend any of it on anger towards those who can't deal with AD.
My true supporters, older relatives who live out of town, chat regularly with me on the phone. They always ask about DH, and really are interested in how he is doing. But the biggest gift they give me is a chance to TALK—about everything, including DH, but just all the normal conversation I miss out on every day. We talk about everything from what kind of soup we're planning to make, to their last trip to the doctor, to what we watched on tv last night. What a wonderful gift to just get to talk, like a normal person. And sometimes I even lift their spirits a little, because sometimes they are going through hard things, too.
I'd like to ask a question of all these people who drop friends when the going gets tough. Who do they expect to be there for them when it's their turn to go through hard things?
This hits home for most of us. I made the mistake in trying to get support from my SIL after my husband was first diagnosed. After awhile she was always to "busy" to talk. My husbands family (for the most part) has stayed away except for a wonderful aunt who has been a God send for us. We lost our best friends, but have made new ones who have supported us beyond belief.
I have learned not to burden my concerns with others who live outside the AD world. That is where a support group (online or in person) is beneficial to help me share my fears and troubles.
Shannon--you brought up an interesting point about how people react to other diseases, giving the example of cancer. In my husband's group of friends, one man died of pancreatic cancer. There was much more interaction with him all the way up to the end of his life. Additionally, his wife was able to continue working all through his illness, continue her outside activities, so that when he died she was already involved with an active lifestyle. Quite the contrast from most dementia caregivers, who put their own lives on hold for an extended time...we actually need MORE social support, not less. Being "shunned" by others just exacerbates the difficulties one faces when trying to reconstuct a life of one's one when caregiving days are over.
MarilynMD, you're right. It is truly the loneliest place in the world to be, and it would mean so much to us to have someone care. Jan K's question is good, who do they expect to be there for them?
Yes, Vickie, my FIL had EOAD--so we knew Steve might get it. However, I didn't have an inkling of how devastating the dx would be on both our lives.
In terms of never thinking it would happen to them--the statistics for AD are scary--if people live beyond 85, I think it is 50 percent get dementia. So since most women are married to older men, there's a pretty good chance they'll find themselves in the same position.
One friend told me a while back that I talked about my husband's situation too much. Now she is arranging assisted living for her FIL who is in the early stage and her MIL is showing signs and will probably follow shortly. It will be interesting to see if/how her attitude changes.
Marilyn, perhaps I worded my comments incorrectly above. I know there are many of you who thought or knew that your LO would get it. I really meant that when I married DH 36 years ago - I never gave a thought to dementia. No one in my family nor his had had it and I really didn't know anyone at that time who did. Different story, now, of course. I'm sure many of my "friends" think I talk too much about DH's situation also!
Starling, I have...and then DH will say to them " No don't worry about that I'll take care of it" or " I was going anyway...I"ll fill er up tomorrow and get the truck washed" and that is all the out they seem to need, knowing what they know. So next time there is going to be a big cute sign on hanging in the truck...with directions signed " By The Management".
MarilynMD. I don't think her attitude will change much if she is arranging for assisted living for the in laws now. She will not know what it is to be full time caregiver day in and day out. She will go on with her social schedule, work schedule etc..there will be the visits to the care facility but she won't be the one dealing with the late night upsets...Just my guess.
Joang said: the women no longer invite the Alzheimer wife to come out with them because they do not want to listen to tales of her horrible life.
I have had situations lately where I want to talk about the coming elections, how the Patriots are doing, anything other than AD, and all the others want to do is discuss how horrible the disease is and how hard it must be on me. I appreciate their concern, but would like some other topic of conversation.
Mimi--you may be quite right. At this point, the FIL needs several surgeries, and she has been the one taking him to and fro because she doesn't work and her husband does. But once things calm down, I agree she won't need to be as involved. And of course, as we've said a million times, it's so different when the patient is your spouse vs. a parent. I am dealing with both, but it is much more manageable in my Dad's situation (early VaD) because he was in his 90's when dx, had been long retired, had already given up driving, managing his finances, had moved to an ALF, etc.
I"ve been trying something lately that seems to work for both sides of the conversation. I answer questions about my husband for a bit and then start asking them questions about something I know is going on in their life and try and stick with their life for a while. It takes a concious effort on my part but I am happier that the conversation is more balanced.
Therrja, I follow the same strategy. I need to be able to talk about AD and our situation, but try after a while to change the conversation to hear what somebody else has been up to.