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Joined: 1/14/2015
Posts: 40463
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Originally posted by: Becky Jane
I am feeling very lonely and isolated like I am going through this all by myself. My husband is in the middle stage of dementia. We have one daughter, and we are very close, but it feels as if I am losing her. I really don't think this is true, but what is this feeling of isloation that I feel? Do people pull away and not even realize they are, or is this just a stage of emotion that I am passing through? Please someone advise!
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Originally posted by: Rkg
yes, yes, yes and yes!
Hang in there! It's an awful feeling and it is one that stumps the ones of us that it happens to. Sorry don't have answers to help you. As I am at the point of telling them all to kiss my ass!
His family, is in for a rude awakening someday!
Their Karma not mine!
His friends I understand a little more only because of their ages. They are all still trying to deal with life and preparing for their golden years, but it still not an excuse. Especially all that he has done for some of them over the years. Again, their karma!
Frankly, if it wasn't for my friends checking on us I truly don't know that many people would know if we disappeared off the face of the earth, Pretty sad! And honestly it's my old friends from high school and friends I have made over the years from work, though many miles are between us care the most.
Again I am sorry I don't have answers (honestly I doubt anyone who really goes thru this does) But all I can say is, your not alone. Many of us go thru this.......
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Originally posted by: Snorky
I wonder if some of it isn't denial on her part, that it's hard for her to face what's happening with her dad. I bet if you talk with her openly, as it sounds like you've been very close, about your feelings it may bring it out in the open and she can vent too. She's probably having some hard emotions to go through. I've always been one to bring these things out in the open because so much of the time it isn't what you think at all. My own children have gone through this. I have one daughter in law who reads the chat each week to keep up on me(us)but my children don't want to---yet. It's just hard for them. I also can have those feelings of isolation from friends because they are still doing those things that I wish we could be doing and I feel alone because of where we are at. Sometimes I think I start to isolate myself too because I don't want to bother them(friends) with this part of
life. It's so difficult to face all these parts of the disease as it affects so many people and so many different feelings.
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Originally posted by: JAB
Becky, have you tried talking to her about how you feel? She may simply not know what to do or say -- you may need to tell her what she can do to help you.
Yes, some (OK, a lot) of family members pull away, for all sorts of reasons (indifference, fear, inability to cope with illness, etc), but it sounds as if you and your daughter really love each other.
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Originally posted by: Becky Jane
Thanks for the response and insight.
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Originally posted by: Snorky
Those three buddies are the real true friends!! It does hurt to see our loved ones ignored and not made part of the conversation. I've had those feelings a lot and yet DH doesn't have much to offer either so I guess I should understand their feelings a little. I think our emotions are very tender at first, but will get stronger as time goes by. I had a very hard time 2 years ago admitting that there was something wrong with my DH, but now I tell everyone when there is an issue at Walmart or somewhere when we are out.
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Originally posted by: Becky Jane
Snorky,
My daughter is a realist and often sees things more clearly and accepts the way life is easier than I do. She really is there for me with love and a listening ear, so I honestly believe what I am feeling is within myself. Yes, friends of my husband are drifting away and the few that do call, he does not want to talk to them. I always call them back and let them know how things are going with him, but I cannot blame them for calling less and less when it is obivious that he doesn't want to talk to anyone. And yet, on some days he will want me to take him to the restaurant in the early morning for coffee with his buddies. A "friend" of mine told me, "you have a problem with your husband. People at the restuarant are avoiding him. They don't want to sit with him." It breaks my heart. I just told him that I would hope that they would try to understand that he has dementia and is often not responsible for things he says. Thank goodness, there are three or four of his buddies who do understand.
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Originally posted by: JEMM
Becky Jane,
It is strange you posted this problem when you did. I have been fighting depression for a couple of weeks now. I too, feel lonely and isolated. I had thought about asking about this and you took care of that for me. It's not only comforting to know I am not alone, but it helps me understand that this is the stage I am going through because of the stage my ADH is going through.
Blessings
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Originally posted by: Neoh
Isolation is very common, for a lot of reasons.
In my case, my spouse cannot recognize that there is anything wrong with her - which means until it gets really obvious it isn't really fair for me to talk about it with our shared support system.
Another aspect of my own isolation is that more of my time is spent doing things she used to do - so I don't have as much time for the social activities that would lessen my isolation.
And last, for me, is how do I respond when someone asks me how I am? My honest answer isn't really conducive to fun times. Sometimes I respond honestly anyway (which sometimes results in an abrupt end the conversation, because what do you say beyond, "I'm sorry...let me change the subject"). More often I just stuff down whatever I'm feeling, so even when I'm with others the connection is really superficial.
Eventually, I'm sure I'll experience the isolation you're feeling - from people withdrawing directly because of being uncomfortable around someone with AD. But you're not alone in your experience - even if it feels as if you are.
I've been working to find ways to keep from feeling so isolated - I attend an AD support group. I don't have a lot in common yet with them - since most of them have LOs in nursing homes or they have already died and my spouse is still at the beginning stages, but it is a place I can talk without having to censor myself. I have also rekindled a deep friendship from high school. We rediscovered each other at the perfect time, when each of us needed an outside ear. Unfortunately, we're 200 miles apart - but we're doing remarkably well by e-mail. It isn't perfect, but both of those help.
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Originally posted by: terromari
Hi. I am feeling very isolated. I try to visit my LO every day if the weather pemits. It is a 32 mile drive each way, but I want to do it as I know we have a good visit. Once the snow comes I won't be going as often. He has been in a facility since last May (hospital, geripsych, NH). I just want to ignore the holidays. My son gave me a guilt trip about spending Christmas Eve with them.I am going, but am sure I will start sobbing either at church or at home, and wanted to spare them that. I will visit Frank early in the day. Not going to my son's inlaws for Christmas. It is a drive in the opposite direction of the NH, and I've spent Christmas with Frank for the past 14 years. I so miss not having him here. I, too, have resumed sewing, just something to fill the void. Sometimes I don't want to get out of bed, but I know I have to. My house is a mess. But I don't care, I just want time with Frank. I just can't stand it sometimes.He is such a good, decent, kind man, with a terribly sore back. He has never hurt anyone that I know of. I just can't understand why he has to have this disease as well. I am trying to be strong, but sometimes it is tough. Yet, I am blessed that he is in a good facility. Sorry for being so down, but it helps to read the posts and respond to them.
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Originally posted by: Snorky
Hi,
In reading your post this morning, I just can't imagine what it's going to be like to place my DH but I am sure it will happen. Sometimes when he is so angry I think it might be a good thing but then looking at him in his chair when he's calm changes my whole feeling. I also have loved and respected this man for 51 years and am not ready to lose him.
As to your son, I'm sure he is just trying to help and he doesn't want you to be alone or depressed. This is very hard on our children also to see their dad be this way. Or maybe he isn't his dad, but he still wants his mom with him at Christmas. Does your husband still know you? This is such a tough season for us when everyone is happy with their families and friends and sharing with their DH or DW while a lot of us can't because they are clueless.
You sound very depressed and I'm wondering if you are being social with friends. I think that is so important with this disease to not pull away from supportive friends. When you say you don't want to be around people because you'll cry, that's ok. I was told this week by a very good friend, when I said the same thing, that I need to vent those feelings and even around friends as it's a "washing". But I hate it too.
I don't have any words of wisdom, just understand how you feel to have lost your most beloved and best friend.
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Originally posted by: lurk
quote: Originally posted by JEMM:
Becky Jane,
It is strange you posted this problem when you did. I have been fighting depression for a couple of weeks now. I too, feel lonely and isolated. I had thought about asking about this and you took care of that for me. It's not only comforting to know I am not alone, but it helps me understand that this is the stage I am going through because of the stage my ADH is going through.
Blessings
JEMM, you were depressed back in September. Did you get any help for it? How have you been between then and now?
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Originally posted by: JEMM
lurk,
I began to feel a little better. Started sewing again as I haven't for years and that gave me something to look forward to. But here lately, I have started to worry over the silliest things. I have night mares some nights and dread going to bed. My dr prescribed clonidine at night, but that gives me a sense of dread. I know there are good meds out there, I just need to go back to my dr and discuss this problem.
Thanks for asking.
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Originally posted by: sf
Becky Jane, I've been down this road myself and it feels more like a wave that knocks me down when it gets close rather than something I've experienced that will go away for good. Our sons have been wonderful, but there certainly was a time when I withdrew from them as I dealt with our crisis. In a way I was trying to protect them from the reality of our situation, protect my husbands dignity; I just isolated myself further. It caused some problems with one of my sons and a new daughter in law.
My DH has been exceptionally close to his brother all his life, two peas from one pod. Now my BIL seems to avoid us except for when we're surrounded by people. Not really support for either of us. Perhaps he's afraid of the illness or just can't deal with it. Its hard not to resent him. The same is true of many of his friends. Similar to RKG, people to whom I have close emotional ties continue to support us, my sisters and friends supply endless emotional and practical support. I find I am fiercely protective of my DH as he becomes more vulnerable and really struggle to just let go of the people who seem indifferent and cling to those are sharing this journey with us.
Talk to your daughter, it will help.
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Originally posted by: lurk
Becky Jane, hi. Here is perhaps another point of view. I have four daughters, and all are very loving. And yet, they don't want our relationship to be all about the AD. They don't want to hear about it all the time. But for me, well, since the diagnosis, I HAVE been all about the AD. And I wanted to talk about it all the time. I was totally preoccupied with all the newness, the changes of plans, the daily discoveries--everything now different.
I am so grateful to have found friends on the forum who listen no matter what I have to say (some of it even fairly intimate). I certainly couldn't have asked those questions or brought up those issues to anyone else. I have vented to my heart's content and learned from others vents. We've laughed with each other.
You have only one daughter. She may have had to be the sounding board for many, many things. Maybe you just need others to share and let her have a reprieve even though you never get one. Could this be an underlying reason for your feelings regarding her? I can only say that I have felt "something" when I've talked to the girls. I finally stopped talking about it so much.
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Originally posted by: Be Strong 2
I'm not sure what I feel. We had dinner with my youngest daughter and family last night. We go to a Mexican restaurant and my grandchildren order in Spanish. That blows the waiter/waitress's minds. Afterwards they came over for an hour or so and we exchanged gifts. The little one's were excited to meet our dog. DW seemed to enjoy the kids, not sure she knew what the gifts were for. Daughter and family stay with her mother and family when they come to town.
Tonight was church but we didn't go. I woke this morning with a sore throat and then was really tired after moving a lot of snow, again. I used the excuse that I didn't want to pass my sore throat on to anybody but in reality I'm having trouble with "Merry Christmas."
Am I depressed? I don't think so. I function completely in a normal fashion, maintaining the house, getting DW off to day care, taking her to the mall for walks, regular meals, keeping up with finances and church jobs and activities; just don't feel too social.
Hard to say if people really pull away or if I'm just more sensitive to it. People are busy with their lives so why should they have to worry about us?
OK, guess I'm venting. Anyway, I will be happy when Christmas is over. I just try to remember what it is really all about. Today, 2004 years ago, my Saviour was born.
Bob 
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Originally posted by: terromari
Ok, I am back. Couldn't visit Frank today because the unit was locked down - GI bug going around. Then I started feeling sick this morning, and called my son to say I wasn't going to come over for church and supper tonite. His wife didn't say a word -- I think she was trying to restrain herself. But they have two small children, 4 and 18 months. I didn't want to bring any sickness over there. Then my son called. I know he was annoyed, and that made me sad. But they have the option of joining the family celebration at her uncle's house. If it was just the two of them, I'd probably have gone, but no way was I going to risk bringing sickness to those kids, especially since it was from a ward that got closed down.
Then I got a letter from a wonderful neighbor from my childhood telling me her husband was diagnosed about 8 years ago and passed this summer. It is everywhere. i will call the NH tomorrow and see if the unit is open to family. If not, I will stay put, maybe join a couple I am friendly with for dinner, maybe not. I have a photo by my computer of the two of us the first Christmas after we met 15 years ago. We looked so good, so happy, and we had wonderful years in between.
I guess my son and his wife will get over it. I guess I expected more empathy from them, and maybe appreciation for not wanting to bring these germs to their kids. But I was wrong.
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Originally posted by: lurk
You are all such good examples of pure love. I'm sorry for all of the hurt. I wish I could help; I'll pray for all of you. Someone Else can bring you peace at least. And maybe send an angel to help get through. Tis the season, after all. It's not all about jolly and merry if you don't let it be. Peace!
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Originally posted by: terromari
Hi. I've decided to try to be grateful for what I have with Frank. It is tough being alone here but he is getting good care. My mission is to keep his limbs toned and strong. As the NH won't do scheduled PT with him (it has to do with his rate of improvement and reimbursement), I go every day that I can to gake him to their daily drop in session. Yesterday he did the upper body exercise very well. Today is lower body. And yesterday there was a music and eggnog party on the other unit on his floor that I got to take him to. A man from another (not locked) unit attended - he had been in geripsych with Frank earlier. So at least they had some conversation and I was able to leave without incident. I can't do this when the weather is bad or when I am back in class (my job was outsourced, so now I am in a certificate class via the department of labor). But as long as I can, I will, and I'll try to enjoy what are now good times. He is confused, sometimes he thinks he is home, sometimes he thinks he has his car and is coming home. But we do have good moments, and I'll try to store them up to savor later. Last year we were buying and wrapping presents and visiting family. What a difference a year makes, huh?
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Originally posted by: shearbear
Wow, this subject I relate to so much. I have felt this way for a long long time. I want to protect my husband, I don't want anyone to know how I feel.
I started to drink heavily this last month to kill the pain but that was not working so I turned to my church and I am asking for help. Already, one woman said she would go with me to the Alzheimer's meeting.
My husband took another turn into this disease 3 weeks ago and i feel devastated.
I would attend church, run out so fast, nobody could talk to me. I just pushed down all these feelings, I isolated myself on purpose so nobody could see my pain..or feel my pain.
I wish you all the best.
Nameste,
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Originally posted by: Betty lou
I have been feeling sad and alone too. My hubby is in the early stages of AD. Last week he was pretty alert,but today he has been real confussed. His daughter was suppose to be here on Friday,but now she won't be here until after Christmas. She will be here on Monday, December 27th. Our son and his wife have been busy getting their house ready for his Family. His sons and familys from AZ will be here too. Our little house is in back of our son's home,so we are close to his family. But I still feel sad and alone.I have noone to talk to cause I don't want to vent on my daughter in law. She will listen to me and is good to me,but she is just too busy now. I guess that I'm just tired of trying to do everything. This AD disease is a hard job. This too shall pass and it is just one day at a time.
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Originally posted by: terromari
Hi. I am sitting home alone again. My LO's NH still has his unit in lockdown. There is GI bug going around very strong. He is still OK. They could not keep me out if I wanted to visit, but I still have a little cold of my own, and would not want to bring in anything more. Also, would not be able to take him off the floor to the lounge or lobby. He woke up late, but in a good mood, nurse gave him a hug, wished him Merry Christmas, and he said "is it Christmas?". I told her I was afraid he would forget me since I was not there yesterday, today, and tomorrow we are supposed to get a big storm. She said she'd say hello from me and give him a big hug. I could have gone to my son's inlaws, but it is a long drive up a lot of hills. They offered to let me ride with them, but I still have this little bug, and I am achy - so I should not be sitting in the back seat of their car with the little ones. I will try not to feel too down - maybe will knit some socks or something. I sure miss that man.
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Originally posted by: lurk
Cool Bob, I hope you're not depressed (clinically as opposed to temporarily) and I hope you will feel better after Christmas. I too, cannot wait until this day is over, but I took a few moments this morning to meditate on what it really is about. (I woke up at 2:30 again; got up at five.)
My sister came to town, and I had asked her if she would help me with the dinner--just the last minute part where one cannot do it alone. She was less than gracious (and I let her off the hook), but I thought about how others probably don't want to be around us or support us.
I tried to think of it from her point of view. They want to be happy and joyous. They don't want to be bothered with needy people. I had a hard time being gracious myself about it, but DD#1 called to say that even if she is sick from the treatment she just had or if her daughter is sick from her morning sickness, they plus there husbands WILL be here to help me. They will take turns on the couch or barfing, but will be here. I was so grateful.
So I have mixed emotions. I try to understand people who don't want to be forced to share the interminable grief with us, but I love so much supportive people. To me, so far, the season doesn't have anything to do with it, but it's still early for us. I can find so much joy in spite of the elephant in the room.
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Originally posted by: JAB
There were two lovely threads on the Caregiver forum yesterday:
http://alzheimers.infopop.cc/e...4102241/m/7104017287
http://alzheimers.infopop.cc/e...4102241/m/9794017287
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Originally posted by: shearbear
quote: Originally posted by shearbear: quote: Originally posted by Be Strong 2: I'm not sure what I feel. We had dinner with my youngest daughter and family last night. We go to a Mexican restaurant and my grandchildren order in Spanish. That blows the waiter/waitress's minds. Afterwards they came over for an hour or so and we exchanged gifts. The little one's were excited to meet our dog. DW seemed to enjoy the kids, not sure she knew what the gifts were for. Daughter and family stay with her mother and family when they come to town. Tonight was church but we didn't go. I woke this morning with a sore throat and then was really tired after moving a lot of snow, again. I used the excuse that I didn't want to pass my sore throat on to anybody but in reality I'm having trouble with "Merry Christmas." Am I depressed? I don't think so. I function completely in a normal fashion, maintaining the house, getting DW off to day care, taking her to the mall for walks, regular meals, keeping up with finances and church jobs and activities; just don't feel too social. Hard to say if people really pull away or if I'm just more sensitive to it. People are busy with their lives so why should they have to worry about us? OK, guess I'm venting. Anyway, I will be happy when Christmas is over. I just try to remember what it is really all about. Today, 2004 years ago, my Saviour was born. Bob
Hi Bob,
You are doing great and I know it is hard at times for us all who are caregivers. We do the best we can under our circumstances. We have so many emotions coming at us at once and each one we have to process. Take Care.
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Originally posted by: Roger G. care partner
Becky jane,
As you can see all of us go through the same thing to one degree or another........
just remember, we are here for you and we will never pull away. That is the one good thing about this forum....You can vent, scream, and cry. We all do one time or another.
Your are doing well and it is just part of this damn road.
Rkg.......I sure would love to be there to watch the KMA notification.....lol
Merry Christmas everyone.
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Originally posted by: Jim Broede
My guess is that many of us have no more than two or three true friends. The ones that would stick with us through thick and thin. Lots of acquaintances. But few friends. We fool ourselves into thinking we have many, many friends. --Jim
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Originally posted by: sf
Terromari, I'll be thinking of you today. Your husband won't forget you and I guarantee his face will light up as soon as you walk in the door of his room.
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Originally posted by: Be Strong 2
It was a nice quiet day. DW watched TV most of the day, enjoyed the Christmas specials of the old sit-coms. Told her we couldn't go for the normal mall walk since the mall was closed. "Why", "Because it's Christmas, Merry Christmas." "Oh, Merry Christmas." And so goes the never ending calendar game.
Got the special Christmas dinner done. She enjoyed it, especially the pumpkin pie with cool whip.
She went to bed early. Her son called after she was asleep. Had news that he was engaged. Life goes on. I told him I would keep the secret until he could tell "Mom" his good news. Actually, life is pretty good.
Bob
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Originally posted by: jilljaime
I am so lost and so alone. I have wonderful family to help, but we are still far from them. By spring we should be back up north. I miss my husband, I have great support here with friends, an great support on the Internet, but I miss my husband and that is why I feel so lost and alone.
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Originally posted by: Cathy J. M.
I remember telling one of my heroines, M.C. Richards (the English PhD who became a potter, wrote "Centering") -- that I often felt quite alone with what I was trying to do with my art. I asked for her blessing.
She put her hands on my head in blessing, and told me solemnly, "You are never alone."
There are times when we need to hear this!
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Originally posted by: Starling
I have AMAZING neighbors. And since we moved across country just before his illness became apparent they were not lifetime friends. But they were, and still are, amazing people.
There are good people in the world. There is also the truth that the people you used to socialize with might or might not be able or willing to be your crutch when dementia gets bad. But it doesn't mean there aren't people out there who will be people you can turn to.
Having the couples you thought were your best friends disappear is a theme of widows that go all the way back to when my mother became a widow in 1946, and probably before that as well. The people who were your friends might or might not still be your friends when this journey is over.
It is what it is.
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Originally posted by: meeko11
Ellen Lee-welcome to your new family. Feelings of being alone are all too common with this disease. Never thought I would envy a couple just putting groceries away together. Let us know what we can do for you.
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Originally posted by: LLW1849
I just found this website yesterday because I was feeling so isolated and alone on Christmas day even though I had experienced several great times with family and friends leading up to the day. We have always spent that day with my husband's family, but now we find ourselves excluded from Christmas events as family has aged and parents have died. I feel like I'm celebrating alone, and frankly, cried all day while my husband sat alone and watched TV as always. I realized that I needed to find a support group and a way to express my feelings. I can't expect my grown children with families of their own to fix my problems, and my husband's son now lives and works hundreds of miles away and visits occasionally. Thank everyone for their input. It has already been helpful.
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Originally posted by: Ellen Lee
Sooo lonely and the farther he slips away the lonelier it gets. Just joining.
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