I have been visiting this site everyday since February,2010. I have read comments that I completely agree with on these pages. But I have always wondered how each and every one of us would react if the shoe was on the other foot and our friends spouse had Alzheimers and ours didn't.. Would we be understanding of their plight? I think not. Until they walk in our shoes day in and day out, they have no idea what our lives are like. And why should they?
When our oldest daughter was murdered in 1990 while attending Florida State, one of my husbands co-workers asked him "Why you?" and my husband answered why not us, we are no different from anyone else. I believe that we as spouses of Alzheimers victims forget that other people in this world are also going through horrific things in their life.
Before Phil was diagnosed, I knew someone who's husband had Alzheimers and I had no idea what her life was like living with him day in and day out. Oh, I thought I was supportive by listening to her and sympathizing with her but not until I started to live it did I understand what she was talking about.
I guess what I'm trying to say here is let us cut our friends and relatives some slack as they truly have no way of knowing what we and our spouses go though and God willing they will never know.
I think that some people are just generally uncaring, and some are helpful and loving. When people they know go through terrible things, they act like they always did.
That is what I have been trying to do, to put myself in their places , to think how would I be.
Some are loving and caring, and listen even if they cannot help. This is wonderful.
Some only want the attention on themselves, and want to think that only their opinions are the ones that are true.
So I do agree with what you say, but, on the other hand, when the ones that show their true colors to be selfish and even cruel, I cut no slack. They are out of my life, in most ways. I will never feel the same about them again.
That does not make me "better" than them. What it makes, is that they were not true friends to begin with, only the fairweather type.
As for myself, yes, I would have listened to others, but never have known how hard it was. NOW, how I regret not helping out my own Mother so far away, now that I see how hard it has been for her to take care of my Dad, (not dementia), I truly wish I had been there for her, helping, not just stopping by now and then.
The anger I feel these days is such a new thing, and THAT, is not anyones fault. However once again, the ones that are not supportive, NO MATTER WHAT I SAY OR ASK..can take a hike, get out of my life.
I think that we can always find someone worse off than ourselves even in this dementia disease situation, I have always found at least one person worse off than myself but I think because of what I am going through now the one thing that I have learned is that I should not pass judgement on anyone else and their situation because I have not worn their shoes let alone walked in them.
Hate to say this....I would not cut my friends slack. They would be making me feel terrible. If it makes me feel terrible then that is not what a friend is for and I don't need that in my life at this time. What I might have tolerated before Alz., I no longer tolerate.
Years ago I had an experince with this gal who had been my best friend for years. She became an alcoholic after her first grandchild died of cancer at the age of 3. I stood by her for several years as she slowly slipped into a world of drinking I knew little about. To be around her made me very uncomfortable and I no longer felt good about being around her. I finally had to tell her that we could no longer continue our relationship unless she got help for her drinking problem. Well, she did not get help and she just stayed away from me which I was glad about. Later, when she became ill I went to see her because she was no longer drinking and was very ill. Now, years later, we call each other from time to time and see each other from time to time. But, we are no longer best friends and we never will be.
With the stress we all are under being full time caregivers....we cannot afford to add to that stress...the other people (friends) are the ones that need to be tolerant. They are the ones that need to cut us slack. I don't have any slack left to give to anyone except my dh.
JudithKb...thank you for that. And I also thought about the letter to friends that you wrote in another thread, what a lovely idea. We do not need to have to balance their misunderstandings at this point.
I have to pipe up just once more here.
While I want to be the patient and understanding person, and yes, I think I can sometimes expect too much from people...
...and, thanks to you all here and the grace of God, I am learning to be more tolerant..
The fact remains, some people really do not care, and even rub your face in it. Some that may have had a jealousy or envious, are glad when something bad happens to you. I know that is horrible, but it is true.
RuthM you have a good heart to give people the benefit. ( especially after what you have gone through, here, I cannot imagine the grief you have experienced.)
Maybe, the people you know are kinder. Maybe, in my life, I did not pick good people to be around. Even my family gives platitudes, and DO NOT LISTEN.
And then there are the ones, that offer their shoulder and ears, that is enough for me. I know they cannot watch my dh and assist, but at least listen with love. I get that glimmer of hope from them, to lift me out of the depths of this dementia despair I never knew existed. And I implore God to make me a better more understanding person.
I think that there are gradations. I had two wonderful friends who stood by me throughout it all, and one very understanding son. Others varied from pretty good to downright obstructive. Sad to say, one of the two friends who was so understanding is now suffering her own demons. I can only stay in touch, but am not able to help her; she has deteriorated to that extent.
i guess i am odd man out as when i have come across friends OR family for that matter, that are not able to tolerate our situation have no more business in our lives. i dont want to have to cut them out of our lives but its best for everyone . finding new friends who ARE tolerant and caring is fairly easy to do especially when you have a sight like this one where everyone is on the same playing fields. i prefer to make new friends rather than find excuses for the old ones nowdays. no excuses no platitudes, no glazeovers when we speak of our emotions and distraught feelings, etc. i have enough of my own emotions and my DH to handle without having to try to understand someone elses who i consider on the 'outside' looking in. we do sometimes become hardened in our emotions but i think its survival skills that force us to do so. trying to stay sane while losing everything important to us is asking enough. i just cant find tolerance for those who have fallen short of a true friend. i'd rather cut them and find new ones - but those few who have been there thru thick n thin, have my admiration, respect, and i would do anything for them if they needed. again i say 'what goes round comes round'.
divvi: You are not odd man out...I am on the same page you are as I expressed in my post above. One time when my dh could still understand some things and he said something to me about some friends coming over. And, I responded, "it would be a cold day in hell" before I ever invite them here again.
He liked these people, but every time he would say a few words and halt in his speech to try and remember the other part of what he wanted to say...they would change the subject. My dh would look over at me with this little kid look with such sadness in his eyes...it broke my heart. They didn't come to visit with him...they came so they could tell other friends we went by and saw Jim.
When I said to my dh that I would never invite them over again...He perked up and said "You are one hard woman". I laughed, but he probably is right. He is like my baby now and if I have to be hard to protect him I will. No one is going to ignore him or hurt his feelings or they will hear from me. He has always been a very senative person and gets his feelings hurt easily.
we have said it before we turn very protective of our spouses when they are weak and vulnerable. just like we would an infant inour care. just like the lionesses do for their cubs. a slight made towards our poor spouses is lack of respect to us as well. i agree pick and chose who you want to associate with. life is too short.
Lots of truth telling here. I hate to admit this but I will now be a better more caring person having gone thru this with my wife. I now know what to do or say when I come across someone suffering. That said, the other side of the coin to me is, my family has a pretty good idea of what this is about. Some either have friends or know somebody that has experinced this and they still are no shows to the only one in the family truly suffering. So, I've cast my concerns about there lack of caring aside. What would I like from them? I think only something as simple as: "Is there anything at all that you need to help get throught his?" Or, "Would it be ok if I came to visit for a few days. Maby we can just talk?" That's all I want for Christmas but it's asking too much.
On the other side of the side of the coin is this: I believe, we humans are by design, mostly egocentric. I believe concern for others is not an up-front priority in the human life. I'm not sure why we are designed that way. But for good up bringing, religion and a host of other things, we have the opportunity to learn how to put others first. I learned it. It was not easy for me and it took time. The sad part of all this is that my BJ is one of those people. She gave her caring ways to me and now I'm pay her back by caring for her. It was one of her strongest traits.
Ruth M. this was a very worth while string. I'm still mostly on the side of those that feel if people close to us don't get it then move on. I will sort them out later after this is over and I have a chance to remember who the H_ _ _ I am. Thanks to all!
My motto is "expect nothing from nobody and when they do something nice let it be a delightful surprise". I find most of my friends are caring people but I know unless they have family with this terrible desease they cannot really understand. I had a sister in law who had alz and I know now that I could have done a lot more to help. We did visit and helped but I know I didn't understand what Ben was going through. He had help and seem to be doing okay. So I cut my friends some slack. I know they love me and that's enough for me.
I have been very lucky I guess. I have not lost one friend. All of them and their wives have been very supportive and caring. They call to invite us to dinner out every so often. They have invited us to their house to have both thanks giving and Christmas with them and their families from the beginning of this and we have gone and everybody has treated Kathryn great going out of their way to spend time with her. This year we were invited again but we will be staying at home because it would be hard on Kathryn now.
I think that while our friends may not know what we are going thru (How could they) if they are true friends they would still be caring and at least verbally supportive. If they are hurtful then I think they were not real friends to start with.
They may not always be able to be physically helpful because life sometimes has a way of setting it's own priorities for people but they could certainly give a kind word and spiritual support.
This is always pulling me apart. How much slack do I give. Our older son and daughter who live here in town. Do not come by or call to check up on their DD. I know they have busy lives. But no contact, they have set the bar. I will not go out of my way to track them down and tell then how things are going. I think if they don't see their DD they can keep thinking all is ok. My son has always bragged about how he has helped this person or that person. But no help for us. I now see it was just big talk to make himself feel better. I am done staying up at night wish and praying they will call. I'm done with them for now. I really worry that DH will pass away and they will regret the time they did not spend with him. They are both in there 30's so they should know better.
Sadly DH had no friends to speak of. Just coworkers. And they do ask about him, but they do not call or come by.
My friends are the best anyone could have, always ready to listen and help when they can. Most live several hours away.
blue asked a very good question--"How much slack do I give." Where does one draw the line? One thing I've decided, the "burden" of staying in touch is not on me. There were some friends that I made the effort to stay in touch with over the years--I decided recently, I will no longer do that. For example, when my Dad passed away in June, one of my friends (whom I hadn't heard from in several years--the last time I called her) sent a sympathy card and wrote "I'll call you in a few weeks." I knew that call wouldn't come--it is December, and it still hasn't. In the past, I would have called and thanked her for the card, but now, I'm not.
I did have a friend whose husband was diagnosed with AZ at the age of 50. I can still remember where I was sitting when I took her call when she gave me the news. I was devastated. I immediately began researching for her. We continued to socialize with her and her husband. When my youngest child entered pre-school 2 days a week, I spent one of those days taking her husband bowling, so that she would have some time to herself. When her husband was placed in a locked psych ward until his meds could be adjusted, I drove her back and forth and although I could not give her any advice I could give her a shoulder to cry on. When her husband was permanently placed, and was then evicted and she had to scramble to find another place, I was there for her.
Looking back, no, I had no idea what she was really going through. I had no idea how painful it was for her to lose her husband bit by bit, day by day. (Now that I do know, I wish I had done more.) But I did realize, form that first phone call that she would need help. I cannot imagine any “friend” not having that realization and not doing whatever they could to help in this situation. Absent that caring, I would categorize a person as an “acquaintance” – not a friend.
I am now blessed to have this friend offer me genuine understanding and support in my situation – she is a true friend.
I think the majority of people are self centered, including myself. I never went out of my way to really help someone else. Perhaps what goes around comes around.
I agree but we can't help being self centered. We're the only person anywhere who's fully invested because only we inhabit our own skin. It's wired right in because it's only you in there.
I agree with Ruth and others about cutting some slack. My x-friends who completely turned their back on us have no conception they did. What I know is that they do love us and the way they see life is different. Yes we do find out some of those around us are shallow or self protective. But even when we are victims of what other's clearly see as hurtful behaviour - they do not intend to hurt conciously.
It comes down to points of view and choices. Some of my friends swallowed hard and broke through their comfort zones and some have not but hide now. The x-friends were telling me what was proper to do such as 'don't talk about it'.
That's true of everyone. Some on this thread see things in terms of themselves. They are judging by what satisfies or does not satisfy their requirements. No mention that those requirement changed drastically and what was fine in the past is not fine now because MY needs have changed.
Others feel too unworthy or are in conflict with their own comfort zones where for example they may really not like asking for something but can't admit that. Or they may find it very uncomfortable to demand or take charge in groups where they didn't before.
There are many flavors and combinations but one thing is very rare. That our friends or family have the concious idea of coming over and hurting us.
What's new like never before is that we are judging and when you combine that with both the pressure we're under and the demands that we become more assertive and take more control - you get this kind of mindset.
Some people here post something and everyone pours support on it. And at other times some post something and there is very little response. Even though it may sound different both posts may have been cries for some understanding but only one got it. Are we being hurtful? No. Does it feel that way? Yes.
We shouldn't trust the judgements of people under huge strain. But we have both the right and the responsibility to make those very same judgements. We are judging as never before because we are constantly strained to and beyond our limits, we live so far outside our own comfort zones we can hardly remember them, and everything ends up on our plate including judging the medical profession, hospitals, medication, ways of doing things, this list does not end.
You want to help yourself? Cut YOURSELF some slack. My wife fell down six stairs on Wednesday. She hurt herself badly and we are still in crisis mode although it looks like we're going to recover. I knew she could fall one day but I gave her the freedom and she was happy in it. Was I wrong? Yes. I never understood just how terribly serious that could be. Should I be judged now? Go ahead. I'm too busy.
I hate my x-friends. I judge absolutely everybody now. I'm just like everybody else. I do understand why though and try not to believe my judgements too much while still allowing them. I'm not a machine and I'm not a god. I'm a human being under constant real strain. I have rights.
My mother and a favorite Uncle both died of this disease.. I would not leave them to sink alone.. I think we learn who are real meaningful friends are when such a disease strikes, Same with cancer and other terrible diseases..my brother and his wife experienced the loss of so called friends when she was Dx with non small cell adnocarcinoma. Friends fled like rats from a sinking ship..but those that stood by...were the true friends. The proof is in the pudding.
This thread was spot on Ruth. Lots of learning, lots of truth, and uncomfortableness for me in some way. I think I have been a lousy friend in many ways.
The best thing I learned, is that if people truly are not trying to help or even hurt you, let them go, honestly I have some doing that. Sadly it is his own blood family that have really hurt us, and my best friend, and no more, they do not get slack, I am washing my hands. I do not hate them, I just do not have the energy to deal with them anymore.
But for the ones that don't call, those I can cut slack. They have not done anything deliberately. I can see how I was when people had challenges and know I could have done more.
And that is another great thing, I KNOW now, that I will be more caring of others, and already have been. Taking care of my dying sister was very very rewarding, more than anything I have done in my life.
Oh how I hope and pray for growth, and for some peace, and some kind of end in sight for all of us, and end to the suffering of our mates, and the suffering of our hearts.
In line with what others have said, even though our posts may sound different, in many cases we are all saying the same thing. I for one, have a different opinion on many subjects regarding the journey depending on what day of the week it is and what new phase my dh is going through. Sometimes I have found myself stopping in the middle of a post thinking, geezz these people on here are going to think I am telling a lie because when I posted about the same subject a few months back I had a different opinion.
And, I am willing to confess, many people on here are a lot nicer then I am and a lot more tolerant. Warts and all we are all trying to do our best.
JudithKB, I to find myself on both side of the fence. It does depend on the day of the week, how long it has been going on, etc. I don't think you are alone in that.
Wolf, don't be to hard on yourself. We all have done something like that with our LO or even our children. As a mom I know there have been times that I thought I need to take care of that before someone gets hurt. Well you guessed it, so you are not a bad person. You were trying to do the best for your wife and who knew it would happen so fast. One day they can do something and the next..... Do we take everything away because eventually they will not be able to do it. What kind of life would that be for either one of us. They were just steps, I would have done the same. As a matter of fact our den has two steps down to it. It is where DH spends his days. Do I close that off.......
Thanks for all your comments. My intent wasn't to make anyone feel uncomfortable or bad. I just thought maybe it was time that we all stop and think of what others might be going through in their lives.
I have some very supportive girlfriends and also a few who dropped me. I figured they weren't such great friends to begin with and if I never talk to them again, that's fine with me. I'm very lucky because my three surviving children are great and they all live closeby.
This is a terrible journey we are all on and we must travel it the best we can. I admire each and everyone of you and I feel bless to have found you.
I have a close friend whose mother had Alz. When we met for lunch/dinner she was consumed with her mother's paranoia and terrible treatment (accusations, told her daughter she hated her, changed her will, etc) as well as her cognitive decline. I would listen, sympathize and then share what was going on in my life (before DH's dx). I had absolutely NO concept of what she was living through and how upsetting and stressful it was for her. When DH was diagnosed, the next time we met I apologized to her for not offering her more help in any way while she was going through this nightmare. I told her that honestly I had no way of understanding her plight because I'd never known anyone dealing with dementia and sadly the "public image" of someone with dementia is vastly different than most caregivers experience.
She and another friend have stayed with me and gladly listen to our saga. Besides them and my sister, no one else even calls much less wants to see us. My biggest disappointment is DH's brother who hangs up on him when DH calls, refuses to see him or take him to play a round of golf. I don't care if he's uncomfortable or embarrased...it's his closest brother for God's sake. I have mostly stopped agonizing over it an have decided that since he chooses not to have anything to do with his brother, then he has in acutality already said "good-bye". he will not be notified of DH's death or the funeral. No slack for him.
I used to be hurt when friends didn't even ask a question when I told them what my husband had and what we were going through. Not one single question. It hurt. But, now, I still try to keep some contact with them. Maybe they're afraid to ask any questions, afraid I might be upset if they ask. Maybe I should ask them why they don't question. Maybe I should tell them, without them asking, exactly what is going on and maybe then they'll continue the conversation. There are a lot of maybe's in those sentences and maybe I should practice what I just wrote. Some of what is going on might be my fault, because I find myself sometimes wanting to be left alone. I don't know why. Maybe I just don't want to be hurt by them. My DH is content with the way things are. He's content to just be with me. Sometimes I am too. But, then, sometimes, I need more. I need the contact, and I know it's wrong to always be alone. So, maybe part of why friends don't call is because of the way we are.
I'm rambling, but that's how I feel today. Tomorrow I might feel differently.
This thread has been interesting. Back in the 70s, 80s and even 90s, being around pregnant women was very painful for me. I was happy for them but my own pain was too much to celebrate with them. They did not understand why I did not want to come coo over their newborn baby. Even my daughter, (who was 1 when we adopted her, her brother was 2) was nasty to me because I could not bring myself to share in her pregnancy. I was there for the birth, got her husband to cut the umbilical cord (he wanted nothing to do with it) and then after a month cut us out of their lives cause he and his family wanted nothing to do with her family. When my granddaughter was born a year later to my son and his then wife, I was finally able to hold her and love her with no pain. But, then this is the granddaughter I have not seen since she was one (now 12) cause he mom lives in California and refuses now to even let me send presents to.
Now I find myself in another world of loneliness. Family will talk to hb, be around him as long as they don't have to deal with the effects of the disease. Strangers are nicer than friend/family. Of course, never really had friends. When I thought I had them, once I stopped going to their place I never heard from them again. The story of my life has been: you are welcome anytime but don't expect us to come see you. I have 6 living siblings and there is always someone that is angry at me for something (often more than one).
I don't have to worry about friends really since there are none. Family is the only one but then it has always been on their terms. Our two kids, which I call a failed adoption story, say I am the worst mom cause I don't support their choices. My son won't talk to me cause I call him a deadbeat dad. My daughter tells me I don't support them enough. I gave money for my DIL to stay in her place so the little ones would keep a roof over their head instead of to my son to keep his truck - a truck he was behind on payments and still bought a $2000 custom made canopy for it and promptly lost it. My daughter tells me their miserable lives are my fault cause I never taught them to 'listen' so they could make better choices. Adult or not - I should be financially helping them so they can make better choices. Help with what I ask?
I give all a break except my self centered kids. Since the day we brought them home it has always been them and I don't think it will ever change. As for my family - I do not expect help, just don't tell me it is 'no big deal'. As for his family - we never heard from them either. His sister is farther along than my hb is, his brother is in his own little world and has never had a care about his brother. I did think his niece who is his goddaughter would keep in contact to find out how he is doing and let us know about her mom, but that has not happened either. Life is what it is - it stinks.
Over the years of my Caregiving friends have come and gone--generally due to the normal changes(jobs, relocation,general divergence of interests). I've always been okay with that. My family has been kept in the loop. They don't ask much, but if I call needing help, they are right here.
DH's family is a whole 'nother story. At the onset of his Mental Illness I tried to keep them informed as to what was happening. It took me 3 years to stop one sister's efforts to persuade him not to take the "drugs". It was okay for his Mom and sister to take insulin for their Diabetes, but not for him to take Psych Meds for his illness? We even gave the twins written permissiion to talk to his Dr. and get information on his Dx, since they didn't want to hear it from me. I felt it only right to try to keep them informed,until, afterDx of his VaD when they persisted in giving him a used Power Chair, even after being told he can't have it. They brought it to him while I was at an appointment and one of them was here with him. They persuaded him to keep it a secret from me too. They were furious when I insisted they remove it from the premises. At that time I backed off keeping them updated. The phone calls in 2 directions. My time is best spent on his care, running the household, etc. At this time, they have been told repeatedly he can not, must not smoke. One sister is funding and another sister and her son are making and supplying him cigarettes. Per the Dr. he can't be smoking; we can't afford them; there is a direct discernable connection between the smoking and the TIAs and an observable decline of function. They're supplying him until Placement happens. I just found out this last week, they believe I am the source of the heavy meds and large doses he's been on and is on now,which are the cause of his condition. Though his mother had a couple strokes and died of a heart attack, and had high BP;; and a sister had a blocked Carotid cleaned oiut and had a heart attack. Also had an aneyurism(sp?) repaired before her death of a massive blood infection a year later, there is no history relating to Vascular Dementia. I have little, but civil contact with them. When DH is finally Placed, they can visit if they chose(generally haven't for years), but they won't be taking him on outings. Our daughter and I have a tenative plan for his funeral and burial. They will have no say, but will be welcome to attend, for closure.
I have always tried to do the right thing, as best I can determine that. I will try to help friends and family in whatever way I can, even if that is just listening, or even just not being another pull on them when they're under the gun. But for DH's family, I'm pretty much done.
Oh Charlotte, I wish I could be your friend, I am so imperfect too but how I would love to come visit you and drink a cuppa with you. I am so sorry for your pain, what can I do? Only pray, only cry genuine tears.
All of you. Oh how hard it is to look for that glimmer , that silver lining, the hope, the reasoning behind it all.
I respect you. Like Carol, I know a warrior when I see one. I've read some of your story from some of the things you said about when you were an innocent child and the events in your life. You show great strength and your husband is a lucky man for that. The life you have faced would have broken many but not you. And it's a lie almost always when we look into other's windows and their lives seem so perfect. Many of them have never been tested and we find a lot out when we are really tested by life.
Style points are nice but they don't actually mean anything much. Getting it done is what matters. But as I type this I'm formally sending out the wish that something nice happens to you. You are due.
Thank you Wolf and everyone. I try not to look back as a whole cause it is too depressing. I try to keep my life in the moment although I do have think of the near future. Finances are the biggest challenge - something all too many of us face. I was talking with the guy that rents a room from my sister here. He helps her a lot. We were talking of the difference between how nice she is to her and how nasty she is to our brother and me. I told him that is because he is not family! He agreed - he has no history with her. I am determined that when she is nasty I will be neutral. The hardest is when she accuses me of being like our mom when in reality she is acting just like here, especially as the dementia progressed -just plain mean and nasty!