I am new to this site... I came here looking for someone to talk to who might understand. I was wondering if anyone else has experienced something that I am experiencing. I had a wonderful circle of friends... most of them my age (late 40's early 50's.) We have all been through a lot together and I thought when I needed them, they would be there for me. Both of my parents were diagnosed with AD in their 80's. My sister and I have been very involved with their care for 10 years or more now. For the last 6 years they have been in assisted living and then almost 3 years ago, I moved them to an Alzheimer's care facility in the town where I live. I spent at least 3-4 hours with them a day. A year ago in March my dad died from AD at age 94. At the time, my husband and I were adding on to our house to try to bring them here (running out of money for 2 in Alzheimers care!) Unfortunately Dad never made it here, he died the week we finished his room and he never go to see his big screen TV! Thank God I had the room done, as Mom was too far along in the disease to know what was going on. His death got lost in the blur, and was replaced with a loving family around her and a new environment. So, she has been here with us and I care for her full time, for 16 months now. My husband and kids are wonderful with her and she is as happy and well cared for as she can be. She is Stage 6, I guess. It is much harder than I thought, but I am lucky, because I have my family and a sister who comes down (from 700 miles away) to give me a weekend off every few months or so. One of the hardest things I have had to deal with though, is the fact that most of my friends have totally abandoned me. They came to Dad's funeral and then they were gone. They won't call or come by, and some just wave at me when I am walking my dog and won't even stop to say hi. One just emails me every week or so to tell me what is going on in her life, but never asks about mine. I try not to talk too much about Mom, or complain too much when I have seen them. Is it just too sad for them to deal with, or do they think they will catch it? I am so sad without their support, and I feel so isolated and lonely. Thankfully I have two friends who have stuck with me and call me and visit me often. What makes people behave like this? I can't imagine doing this to a friend. Has anyone else experienced this? I was just wondering if it is just me, or did I pick some pretty lousy friends in the first place? I have read a lot of these discussions and they have really helped me already! It seems like you folks are the kind of friends I need!

I went through something similar. When I was trying to work out everything about moving in with my LO, many of my friends said "No, don't do it. You will lose all of your free time." Well, I did it and within the first month of moving in I lost 95 percent of the friends I spoke to. They said I didn't have time to be a friend anymore. I was sad at first but got over it....those are the people that we don't need in our lives....people who only need us if we're doing something for them. "Those that don't matter mind. Those that matter don't mind." Almost a year later, I couldn't be happier living with my LO around the clock. Besides, I filtered out my friends and got rid of the fake ones! You should do the same!

Cindy Sue...my husband, Ed, passed away in May and there were a lot of people at the funeral home and funeral. I had not seen some of them in several years.

Alzheimer's is, to me, the most isolating disease we can have. If our bodies are sick, people come to see us. If our brains are affected, they stay away. I don't think they mean to be unkind, I just think they don't know what to say or how to act.

If it were not for the friends on this message board, I would have been completely lost. They understand us and give all kinds of support. Good luck to you. Nancy B.

Cindy,
I am just guessing here, but perhaps your friends that no longer come around or call are feeling guilty becasue they know that they would not do as much for their loved ones if needed. Being around you may just remind them of that. Who knows? BUT, blessed are the two friends that DID stay with you. Consider them a blessing and pay less attention to the others.

You have done the the right thing, and a wonderful thing for your mom and dad and you will have no regrets.

Peace,
Mari

Cindy Sue,
I'm sorry for the loss of your Dad and for what brings you here. I'm, also, sorry about your Mom.
Welcome to the AD Message Boards and Welcome to OUR family.
Yes, it is very sad that many people (so called friends abandon you when you need them most!) As Nancy said, people just don't know HOW to be around people with AD/Dementia. Plus, they can't understand why you give up a good part of your life to be a caregiver! They just don't understand at all! Some are selfish and live in their own worlds and can't be bothered as April said. Others are just lost and useless.

I've been told that I am different now. The life of a caregiver is very different from the rest of the world. So is the life of the person with AD! Some people just can't or don't want to handle those differences!

I'm sorry you are feeling alone. You are blessed to having a loving, supportive family and a couple of good friends. Many people don't even have that.

Please, come here as often as you'd like. We are here. You are NOT alone.

Those other people, the ones who abandoned you really weren't your friends! I went through the same thing! I'm sorry to say that. I don't want you to feel any worse than you feel now.

But, you have NEW friends now! US!!!

Also, please call your local AD Assn for help/guidance. If you need immediate assistance, please call the AD Helpline @ 800-272-3900. They have professionals there 24/7 to assist you.

Again, Welcome to OUR family!

I've had the feeling for a while that when we become totally consumed with dementia our friends get tired of hearing about it. We aren't as upbeat and interesting as we used to be. We're too exhausted to carry on a decent conversation. Perhaps some of the fault is ours. Sure doesn't make life any happier does it?

Hi Cindy,,welcome to the forum !! Yes,,we all have friends like you have/had. Its not uncommon for many lifelong friends to fall by the wayside,,once a person becomes a 24/7 caregiver.

Your friends are at an age,,and at the time in their lives,,,that they can come and go,,have raised their children,,can work outside of the home,,get together for dinners or out of an evening of fun.

They don't really mean to be mean,,they are just "clueless,,,and uncomfortable" as to what to say to you. Since you are a 24/7 caregiver,,you aren't available to do alot of things. And I think that it does make them uncomfortable as to how to act or ask you anything,,cause they think that you no longer know anything other than caregiving...and that you're restricted in the ability to go out with the girls.

But,,those 2 friends that have stuck by you all this time,,they are "golden treasures",,,they are "true friends".

Its wonderful that you're able to provide the 24/7 care for your Mother,,and its also wonderful that you have a supportive family that helps you,,,and God bless that sister of your's who comes from 700 miles away,,to see Mom,,and to give you a break.

So,,all of us that have been caregivers or caregiver advocates,,all know how you feel and what your'e experiencing. Don't dwell on the fact that these "old friends" don't bother with you,,,just rejoice in the fact that you are way ahead of the game with having a wonderful family support system,,,and 2 great friends.

I do hope that you can manage to get out with those 2 wonderful friends at least once a week,,,you certainly deserve it. Peace

Nice to hear that you have two friends that haven't abandoned you. I'd make the most of it. Two quality friends. That's better than quantity. --Jim

Cindy, as you have seen in the other replies to your post, the situation you described, while sad, is not unique (which makes it even sadder, IMHO). I had a lively circle of friends prior to Mom moving in with me. Now, I'm down to 3 who keep in touch, let me talk about Mom, and badger me about making "dates" with them. I take responsibility for part of it. I've let them go as much as they have let me go...I haven't tried as hard as I should to keep in touch with my MIA friends, and it's hard for me to be cheerful and fun when I talk or visit with anyone. I think it's easier for others to just put caregivers out of their minds than it is to think about what we are going through and wondering if they will be asked to do the same thing, too.

I haven't had any friends who are going through what I'm going through (being a full-time caregiver), so I don't know what kind of a friend I would be if the tables were turned, but I'd like to think that one of the valuable lessons my experience with Mom has taught me is how to be a friend (through example and non-example).

Here's the thing...when Mom is finally at peace, I'm probably going to pick up the threads of my tattered friendships, but only for amusement (my friends are fun to be with). I don't think I'll take them seriously any more...they'll pretty much be the equivalent of a Seth Rogen comedy; you go, you laugh, and then forget about it (until the next Seth Rogen comedy).

We're your friends, though. Never forget that.

Here's a question for other caregivers...when someone asks how your LO is doing, how do you answer? I can't seem to just say fine (which I think is all they want to hear), so I just shrug and say "She's declining, but at least she's safe and looked after and loved." What do you say?

-Mary Ellen

Cindy,
I am sorry you have the need to be here but welcome to a wonderful place where folks understand the impact dementia has on all involved.

From Meeko11 "I've had the feeling for a while that when we become totally consumed with dementia our friends get tired of hearing about it. We aren't as upbeat and interesting as we used to be. We're too exhausted to carry on a decent conversation. Perhaps some of the fault is ours. Sure doesn't make life any happier does it?"

I've seen this in myself. My life has been taken over in many ways by dementia. If I'm not helping my mother, I'm thinking about the next thing that needs to be done or checked on. But I acknowledge that that is the way I have chosen it to be.

I know it's hard to experience the isolation that seems to come with a dementia disease. I'm sure each of your former friends have their own reasons for backing away. The ones that have continued to stick by you are the ones who you treasure.

Dealing with my mother's dementia has given me frequent opportunities to learn and grow as a person. The lessons I have learned have not always been easy but I am a different person now. More patient, more compassionate, more understanding.... not just with my mother but with other people and their choices.

I hope you will come to the boards often. There is great advice, concern, care, and options given by the members.

Kate

Hi Cindy

I too have that isolated feeling. My mom is my best friend and to have her be so different has been the hardest. This forum on many occasions has saved my sanity. Many times it makes me realize that others are in a far worse place and it makes me grateful for the days that mom and I share that are meaningful(there are still a lot of these).

Be encouraged
Hollidais

Thank you everyone for your kind words. I know it is nothing that I have done, but it is so hard not to have your feelings hurt when your friends abandon you. I am just really shocked by the way that some of my very closest friends have acted. I found it very comforting to know that you have seen this in your friends too. I have been involved with this disease for so long, and I have definitely learned that I must look at the glass as half full rather than half empty. I must look at all the things that I can still do with Mom (although the list keeps getting shorter!) Sometimes I must just be content seeing her sitting in her chair with my husband and the kids and the dog and cat sitting all around her watching television and trying to make her laugh! I try really hard to just stay in the moment and find whatever joy there is right then. Some days it is just hard to find. I really do miss my friends but I am so glad I found this place with all of you... thanks for your help!

Cindy Sue,

I'm glad you have found us...this is a GREAT group of people. And it is a wonderful outlet for all our concerns and frustrations with other folks that know what we are going through.

I, too, have noticed a sharp decline in the number of "friends" I have. Part of it is that I don't have a lot of time for the more trivial things. You are right to enjoy every minute you have left with your mom. And some of it is that I got tired of seeing that "glazed look" in people's eyes when they would ask me how my mother was. Some stopped asking...those I don't consider my friends any more. That's what true friends are for, to share the bad times as well as the good. Treasure the 2 true friends you have...many are not that fortunate.

Mary Ellen, in answer to your question "What do you say...", that is how I chose my screen name. DJ is not my vocation, just my initials, and "okay" is usually what I answer most people when they ask. I know the ones that can stand to hear more. And "okay" is not a lie. Even when it's bad, it is okay. It just is what it is.

When people ask me how is your husband. I usually say he's happily confused which is the truth. I've also lost friends and family have disappeared. I know I must sound "down" and in another world as a caregiver but I also refuse to appologize for that. My one friend has stood by me. I went through a similiar experience with her three years ago when she was divorcing her husband who had schizophrenia. I never abandoned her and her son and never would. Our conversations often started off about how she was feeling and dealing with the pain. It is too easy to be a friend when all is good. Friendship is real when times are bad and you feel like giving up and others still reach out to you. Like in this forum.

Yep, my friends, my Mom lost most of her friends, her church (priest never came to visit and KNEW she was ill, hmpff!). Only a few came by at all and eventually no one. Yes, it was very, very, very sad. We both felt alienated. I was very fortunate though - I have a husband who surely I don't deserve but thank my lucky stars every night for! lol! He would listen to me every night as I needed him to. He is most kind.

So yes, now, a year or more after placing my dear Mum in long term placement and joining my husband in a new city in a new state, I find myself very short on friends. I am having to start my life over again. Very strange.

I am hurt by my friend's disappearance and distancing. I don't really trust them like I did before, I love the Seth Rogen analogy. Yeah, kind of like that *laughing*

Here are my true friends. I hope one day to have one I can go to coffee with again and someone who is brave, caring and would know enough to do what my husband did, he gently helped me to see I had to let go and get help - I knew he was right, it was so hard but I sure as heck could have used that same kind logic from a girlfriend too!

I guess God has other plans for me and other quality friends coming down the pipe. At least I hope so. We'll see.

The people on this site are the best friends a person could have. Thank you!

I have found that people want spontaneity. But that can't happen when you are taking care of someone. Everything has to be planned for and a lot of prep time is involved, and sometimes I find even the planning is too much trouble and effort. Last week I was asked to go out with some people after work, I said no, thanks,I have prior commitment. This has happened a few times. People who are not doing this don't really get a true picture of what is involved in caring for a person, the time and effort that is involved. I don't feel like explaining it anymore and I really don't want to see the glazed-over-eyes-look that I get when I do try and explain. I find that many people just don't want to hear it and honestly, I just don't want to tell it. I do have a few people in my life who understand and they rest just don't matter to me any more.

Cindy Sue:

You can see by all the posts that you are not alone, but I thought I would chime in anyway – if only to vent.

The issue of vaporizing friends is a raw nerve for me, and I am not sure I will ever get past it. The behavior of our "friends" when we need them most is unforgivable.

My mother helped EVERYBODY in her life – friends, family, clients, strangers – she never turned her back on a soul who needed help. And, she never expected anything in return. She just did what she knew was right.

She was also very social and loved to give great parties. Everyone ate and drank all around themselves, had a fabulous time and reciprocated with their own parties. We were all so very jolly. These weren't casual acquaintances. These were people we considered close friends for 30 or more years.

Well, I don't have to tell you what has happened – all but a few have disappeared into the wind. It is like we never existed.

We are so grateful to our few, faithful friends – Jim is right: quality is far better than quantity – but being abandoned is shocking, painful and infuriating.

My guess is that my Mom is like a terrifying crystal ball view of what could happen to them. Tough. Suck it up. She would have done it for you in a heartbeat.

I had better stop. I am about to get on the telephone to some of these stinkers.

Just know, Cindy Sue that you are not alone in the disgraceful behavior of former friends. It is not your fault or your loved one's fault. You did not pick lousy friends – just ones who were not up to the test of friendship.

It sounds like you have created a beautiful home for your Mom and can be proud of what a great daughter you are.

Kit

One of the best things about these boards is that you see there are so many people going through the same things that you are. I only wish I found these boards sooner than I did, but I am so glad that I am on here now.

I have definitely not been as available to my friends as I used to be. Some just can't understand and have sort of forgotten me. Others have backed away somewhat, I think they just don't know what to say to me. Others stay with me through thick and thin. People who haven't been through this really don't understand what we are going through. I was one of those people who did not understand before my mother got AD. It consumes me most of the time. I'm sure I'm not as much fun as I used to be. When I do make the time to meet up with friends, I last for a short while because I am so exhausted.

More disheartening to me are the friends of my mother's who just "disappeared". These are people who have been in her life for years.

Personally, I'd have to say, "Where did my FAMILY go?" But I do understand what you're saying. I have three or four friends with whom I get together on a regular basis for an hour or two. We get coffee, go shopping, or just go for a walk. I try to stagger my "appointments" with these few gals so that I don't have to go too long without a nice visit. Each of them came to be my friend in a different way, but each offers an understanding ear and a couple of hours to forget or complain.

Dearest Cindy Sue,

As I have read the posts here, I see so much wisdom, honesty, pain, and acceptance from those who share this experience. I, too, have seen my friends evaporate . . .because I myself have evaporated. I know I am not the person I was four years ago. The person who provides the best support for me is a caregiver whom I hired in November 2008. She loves my mom and tells me "whatever you need." She does a lot of things she doesn't have to do; she pulls money out of her pocket to do special little things for my mom. She does my laundry for me so I can go out. She will stay overnight so I can get away.

For Mary Ellen, when people ask me how my mom is, I give a realistic but very short answer. I work in a place where people are very caring and many of them frequently inquire about my mom. They are sincere in asking, and some of them have had their own difficulties with caring for a parent. While they can understand and sympathize, I think for them to hear too many details brings up such terrible memories that they cannot listen for too long. So, I usually thank them for asking, say that the situation is what it is, the disease is progressive but that my mom and I are able to enjoy many things like the dog and music. And that's as much as I say.

Cindy Sue, your two friends who are standing by you are God's presence in your life, as is your family. Cherish that. And of course, this forum is filled with people who understand and care deeply. I will pray for you, your mom, your family and your two friends every day.

Hello everyone struggling with loss of supportive people in your life,

I, too have felt the isolation you describe. But, I have to admit, I was part of the reason friends had drifted away. Yes, this disease is difficult for others to understand, if they have not had to deal with it first hand. But, over the last two years, my whole life and being had been consumed with trying to help my ADLOs. I didn't have time to contact anyone for any leisure visits. My only conversations centered on everything and anything related to my parents' dementia, my reactions to it, and my trying to get them help. If people were willing to listen and help, then I continued to seek their support. If they weren't, I didn't have time to support a "fun and worry free" relationship at the time. So I stopped contacting those who couldn't handle my newer MO, so to speak.

My way of handling this new stress was probably - no - CERTAINLY stressful on the people I talked with. In fact, I was thinking that if I didn't get ahold of my own emotions, I was going to alienate EVERYONE. I feel fortunate that a few - very few - friends could stand by me and my extreme venting of my stress.

Now, two years later, my father has passed away, my mother is in a wonderful ALF near me, and I am much more on top of all the duties I have taken over for my mom. My conversations are much more positive, and I actually feel like having some fun, relaxing visits with people. I had no time for such frivolous behavior before now! So I am ready to invite some fun back into my life.

Many of you have not had the luxury of having some fun in a very long time. But I do hope and pray that you figure out some way to take some YOU time. I was about ready to break down a few times during the most stressful times. I am grateful for the ability to have some time for myself now and then.

YOU ARE WONDERFUL, GIVE YOURSELF PERMISSION TO HAVE SOME TIME TO YOURSELF.
meeska

People who are divorced will tell you that friends shift over time. I think there is even a book called Friendshifts or something like that. We don't live in Mayberry, RFD and people move, marry, divorce, change jobs, have kids, have kids with special needs, start making more money, lose our jobs, start making less money, and yes...start taking care of sick relatives.

Probably many of us left friendships in the past when we -- or someone else -- had a life changing event.

It's just the way things are and it's best not to waste too much energy on things you cannot change.

One door closes, but others WILL open.

quote:

Originally posted by Wils' Mom:
Personally, I'd have to say, "Where did my FAMILY go?"

Sadly I have to say the same............Where did my FAMILY go???.............I am lucky that out of all my friends 3 keep in touch regularly even if I don't return calls like I should. They know that I am exhausted or just don't much feel like talking. But my family thats a whole other story........two of my aunts got an earful a couple months ago when mom was still in NH. Now that mom is home with dad and I, I wonder what their excuse is for staying away and not calling. Yes I agree with everyone else, this group has given me a little sanity and knowledge that sadly I am not alone (with my dad) in fumbling through helping a LO with this awful disease.
Hang in there and feel blessed for the two who are there for you.