WE just got off Skype.Daughter no 1 and daughter no 2 have just returned to Cape Town from a 13 day trip on safari...Daughter no 2 had her computer and it is the first time we got to skype with them which was very nice. Daughter no 1 has been without a laptop for some time now...and we have all wanted her to get a new one or at least get a monitor to plug in so she can see what she types and communicate especially with the skype... During the conversation, I asked when she was going to get on skype...some hesitation and then well this trip just cost a bunch so it will have to wait. I asked if laptops are expensive there and the answer was well next month she and some friends are going to Victoria Falls...well that is not a day trip! So a computer will have to wait. Then her dad asks, "when are you coming to visit?" "soon" I interjected, probably the annual April trekk. Then the I' don't know....kind of came from both..well daughter no 2 and her family are recovering from terrible financial losses and are starting over. This trip for daughter no 2 was paid for by daughter no 1 which was a wonderful gift and of course a time for close bonding. That is important especially when a parent has an illness like ALZ..at some point they will need to draw strength from one another. But when her dad said " I am getting older now..I am 81 +....." I know dad...but you look great...." and so it goes. I could not believe that another big safari type trip or whatever this is is much more important than getting a computer that does not cost life and limb to have free skype to talk to your dad is..... I have had to ask her to write now and then which she will, between dinners out and fun trips I guess. But this tells me that talking face to face when you are so far apart and cannot just hop a plane is just not a priority. I am NOT sending funds for her to get a computer..she has a very well paying job...life is a holiday and every meal a feast mixed with some stressful work. I am at the point where I am not going to write or send any further updates to her..whatever she hears about her dad's condition, she can glean from her sisters who do communicate much more. Well that is my vent for today. Color me steaming mad!
Mimi, If it helps, our son lives in town and does not call or come by to see his dad, and our daughter lives in the next town over and doesn't come by very often. I have given up on trying to get the kids to talk with their dad. Some day he will be gone and that is something they will have to deal with. I just do my best to keep my DH happy. I so wish I knew what to say about this. I wish I had the answers. I have had to just let this one go, I can not change it and for what ever reason it is what it is. I hope you don't let this steam you up to much.
I just am so upset with how hurt DH was..I mean when she said this and brushed it off with but you look so good....and he repeated yes but I am getting old.....he never talked like this before and just yesterday he even admitted with a little sadness and frustration that his memory is iffy..knowing that he had asked me the question already several times but can't recall the answer.
I have decided that I am not going to bother sending her any letters or emails with updates about her dad. Whatever she learns she can learn from her siblings. I don't care about this for myself, I care about it for him a guy who did everything possible for the girls all the years, how generous he has been, helpful when it meant going way out of his way for them...Daughter no 2 and 3 are more in touch with him, calling, skype etc. I mean it was like HE was pleading with them to come see him....and I know he would even opt to pay for their trips..( I am not because no 1 and no 2 are the most clueless of the bunch about $$)
If he died tonight, I would not be surprised now if daughter no 1 said something like " Oh I just can't come for his service..I can't stand to see him gone, I will always want to remember him as he was strong, and vibrant..." and not come home at all. I will say this, if she ever pulls that, I will have nothing more to do with her.
So sorry Mimi....I know how that hurts you so. Your post reminded me of when my girls were little and they would keep doing something I didn't want them to do and I would often say "Now I have really had it !!" No matter how old our kids get they often seem to disappoint us.
My dh is an only child and has a cousin about the same age and she was an only child. They grew up together and they both feel like brother and sister more then cousins. A couple of years ago I asked him if he wanted me to take him back to Illinois to see her. He said he never wanted to go back to Illinois. So, shortly after that he seemed to go through a spell where he was getting worse and very depressed. So I thought it would make him so happy if he could see his cousin and maybe get him out of his depression. I sent her a round trip ticket to come here to Cal. to see him. I never will forget the look on his face when I took him to the airport that morning and he saw her standing on the curb waiting for us with tears running down both their faces. He kept asking me why we were going to the airport...and I told him a fiblet, that they had a new building I wanted to see. I am so glad I gave him that week of pure happiness, because I know now he probably will never see her again. Yes, her and her husband spend money going other places, but I put that aside for my Dh's happiness. He never knew I paid her way here and he probably will never know.
in my opinion its useless to try to correct personal behaviors. if you have to ask for considerations then usually if you get it--it will be a forced situation even if they do comply and uncomfortable for all. we have to just accept that family- including siblings and children sometimes chose not to want to have a relationship while we endure this disease, and prefer to stay marginalized and free of the pain and anguish of it all. it is very hurtful and devastating to witness the neglectfulness, but like everything else AD, we cant change what it is.
I know it hurts, but if you do it by email, it would not be wrong to send to her. I would not make a direct effort to contact her, tell her things, but just send the email to her too. Make sure you put in there how much it hurt their dad that they are not coming to see him anytime soon. It might not make a difference to the one daughter but then again maybe a hint of guilt will get her!
Mimi---I know these are your kids, but I see what you are doing to yourself over their disregard and can only reccommend what I had to do with my DH's family--quite trying to fix them. Concentrate on you DH and do everything you can to make life as good for him as you can. You really don't have the energy, physically or mentally, to do both.Besides, the're grown and it's their job to deal with theirDadandhisiullness. hat they choose not to will create their own recrimiinationsand they'll have to deal then. In the case of my DH's family I make sure to provide periodic updates, an d if something bigger ha[ppens. I initiatenocalls, letters, e-mails otherwise. I include notes that DH would like a call; but don't in sanyway ask for the to do so. We have helpers who come for a few ours, most days, and he has outings twice a week. His days aren't full, but we manage. We are lucky that our Daughter keeps in tuch, but she lkives in CA (we're in Michigan) so with fuinances what they are visaits are rare; no Skype either; but she is 100% with me on decxisions for his care. Try reducing your contact to all 3. Don't lookat their facebook pAges and wind up over their activiies. Periodically,send generic updates, perhaps with just a nudge of "Dad would love a call." In the meantime reach out to those who have stuck by the two of you, for calls, letters, whatever.
As to later, handle that as you decide, but my, opinion would be small bequests, and the bulk to places, programs, and things which he had interest in. Creates amessage but not a punishment that would change nothing.
I have sent each of them a note, not identical, but more personal about how DH is doing. Two at least do call and Skype which is something. The other one in Afrika, is working there but has an ideal life of work, friends and things to do which is fine..and she should. But to be so glib, and not make it a priority to converse with her dad, is more than I can stand. I am not going to email her about anything, she can make the contact if she wants to. I am done. The other two pop up and one can't just hop a plane either...but what pains me is not that they have these fine activities in their lives but that they seem to make no room for Dad. We all only have so much $$$ for travel and air fare..so not to plan some time for Dad is unforgivable in my book I am not going to beg or cajol or any of that..Either they care of they don't. One thing you can be sure of is I WON'T FORGET IT AND I WON'T FORGIVE IT either. And should he not out live me, they will get no vote in any memorial plans either. It will go the way DH and I have decided and I will take total charge.
mimi - please do not say you will not forgive. Forgiveness is not, I repeat NOT for the one that has wronged you - it is for you. When we carry unforgiveness it eats us up inside. You have enough stress without that. I beg you to forgive her selfishness for yourself. Then let her go. Come to a point of indifference so it does not take you down anymore than the disease is. She is the one that will then have to deal with her selfishness, not you.
Carlotte, You are very sweet and lots of what you say is true. I do have enough stress and worry to go around and that is exactly why I will no longer go out of my way for this oldest girl. Her life is full of her work and her friends and her parties and her social life. It does not mean she doesn't love her dad but it does mean she is very self centered and full of just what she wants to do. Last spring she came to visit BUT she did not converse with anyone about schedule, she just announced when she would be where and as a result she missed one of her sisters who was in the US at the same time..they literally passed each other in the air, one going north and one going south on the very same day. She even argued that she had talked and the others made changes...I finally stepped in and said no you announced your schedule and had you talked you could have seen your other sister but as it is, no 3 ( the youngest) in order not to miss seeing YOU flew out here to see you otherwise she would not see you either..the middle girl could not do this.
I am sick and tired of this 50 something woman who has made bad financial decisions all her adult life, and yet landing on her feet because others bale her out in one way or another, to put her father on the lower half of her priority list. Somehow it has always been more important for her to have her play time, to destress by taking trips when she should have been saving her funds after divorce and before alimony would stop in order not to end up bankrupt. I could go on. But when she said, after this all expense paid trip for her sister, who would have been happy just to visit with her and not go on such an extravagant outing, to say that she can't afford even an iPad to communicate with her dad on and you can do skype on iPad, because next month she and her friends are going on another great long trip just tells me all I need to know. I will not forget this and when I say I won't forgive it either means I will no longer go out of my way for her in any way shape or form and when it comes to my trust, the part where you gift things to others....guess who will be left out. She will get only what comes to her by the way of the law, meaning part of the house but not a dime or ring or bracelet or painting etc..That is what I mean by not forgive her...if her dad is not important enough for her to write, call without my having to send her an email to tell her how much he enjoys and misses hearing from her or get an inexpensive computer so they could skype, and to hear him practically beg to see her more often because " but Iam getting old" when just the day before he even admitted he knows he forgets things...to hear him beg like that is more than I can stand. I am and Irishman and as such do not generally hold a grudge. But when I do, I either cut you out of my life altogether, or have as little to do with you as I can other than the required associations but I no longer go out of my way. If this is the way she wants it, if this is as important as her dad is to her, then fine and dandy, I will not be sending articles, communications etc. The ball is squarely in her court and any info she gets depends on when she comes up for air or she can learn anything about her dad's progress from the sisters who do take time to put him in their lives in whatever way they can. I will not be her tool.
By the way, my DH's brother was here and he heard this conversation on the skype and was as upset as I was at the tone of it.
Mimi: I am still so sorry that you are having these problems. You and most of us do not need additional problems with the care we have to give our spouses. We always hope when things go bad with our kids that "things" will get better, but it seems that the kids are never as hurt as the parents and after time passes they have moved on and our heart is still aching. Hopefully, your dh will not remember what is actually going on. Take care.
Thank you more than you will ever know, I have had this exact discussion with myself all night. Same problem, sounds like same kids in the same situation. I guess it makes me feel better that this is a big boat with a lot of ignorant (middleaged) children.
Mimi, Sometimes kids who live in the same city, 5 miles away do not come by unless you ask them to do something specific. They have their own lives, problems, etc. They are very aware of their father's condition. DH was very good to them growing up and in one case got son through personal and financial problems. They take vacations, go to various entertainment venues and may come by for 20 minutes once a month . We are blessed with one daughter who comes regularly, calls, takes DH out for Ice cream, asks if I need to get out. Also, I have decided to discontinue birthday gifts to grandchildren who do not acknowledge the checks I send for their birthday. A phone call or an email would be so easy.
Thanks everyone for your input..I have cooled down some..but my position is still the same. Today, no 3 daughter, who was out here for a seminar, came up with a friend. WE had lunch and had a chance to chat. No 3 of all of them is pragmatic. She had some insightful analysis after I told her what the skype chat involved. She agrees her eldest sister is irresponsible in areas of finances. She and her sister I guess have had chats about this and no 3 tells no 1 " Wherever you are there you are" meaning unless you take to heart advice smarter people have shared with you about saving and finance, you will always be in the same rut. But then she surprised me by suggesting we all chip in and get her a computer of some sort to which I said NO, that is enabling and is the wrong way to go if she is ever ( but doubtful at this age) learn. Lord knows what she willd o when she retires...guess live with her kids.
I will take the suggestions to heart and just let this mess go...let her learn about the conditions of her dad in whatever way she does but I am not going to send her missives. If and when she writes I can answer her questions. Otherwise the ball is in her court..this is one tennis game I won't play nor will I shag balls for her.
Today, no 3 daughter noticed. as did we all, a new change in her dad beside the slower walking...while driving in the car he asked what that doodad on the handle by the backseat doors is...the gadget that you hang your clothing bag or suit on.....and there are other things...But DH still has his quick wit and is very funny. HIs overall sweetness and desire not to be a problem is amazing. DH is such a gem...
Mimi, I know all too well that it is a bitter pill when a child who has been raised lovingly and given support all their life from a parent stays detached when a horrible illness like AD comes along. I spent years emotionally where you are and came to terms with it. As others have said, I realized I was banging my head against a brick wall and had enough to contend with dealing with my husband's decline. It is what it is, I made a conscious decision not to let the situation stress me anymore--and it doesn't. Bottom line, you cannot change a self-centered adult into a compassionate, caring person. Especially not when you already have a 24/7 job caring for a dependent spouse.
Strangely, once my husband was placed this summer, there is a little more attentiveness on her part. A friend suggested that it may be because now, I don't actually need help from her with the hands-on care. Weird, huh?
None of the kids can help with the hands on care except for one who can fly across country, the others live overseas. One does skype on a pretty regular basis. And it is fun to see them and the kids etc. But the third is just all about me. Got an email today saying she got her Christmas box and a card...what she hasn't received yet is the note I wrote way before the skype chat the other day where I suggest she get the skype and had told her of her dad's condition. I sent a short reply."yes the box is for Christmas and glad you got the card." nothing more. I will just move on myself with it all..I can't afford to get a case of IBS going over this.
Like you, we raised our children right. They are not us. They don't think like we do. I am going to share with you what happened with me, and I hope it helps you and others.
After my husband was diagnosed, the kids came home a few months later for vacation with the grandkids. One of my sons got me aside and had the audacity to ask me what was wrong - why was I so uptight? I told him "your dad is dying and there isn't anything I can do to stop it!" I started crying and he held me and let me cry it out. This same son, over the next four years, would visit once a year, check with his brother and ask him if I was telling them the truth about Dad's condition, or was I making it sound worse than it was!!!! I was SO MAD!!!! And, after my husband died, the boys admitted that they had stopped answering my e-mails because they didn't know what to say - that my reaction to the earlier e-mails was such that they were afraid that they would say the wrong thing and set me off - but their NOT responding made me mad and hurt my feelings.
I learned early on to just write them the facts, not expect a reply; I knew that they love both of us; I also knew that the boys were scared (and still are) that they will end up with AD too; that they stopped calling him on the phone because they were at a loss of what to say except "I love you" and after they said that (he couldn't say it back - he just said "yes"), then they would talk to me. They couldn't take watching him deteriorate from the man that was their father.
For some reason some people have to emotionally distance themselves from the people that they love the most. It doens't mean that they don't care. It means it is a survival tactic. And we need to realize this and let them be. AFTER, you will be glad that you didn't force the issue. Let them do what they are comfortable with. It isn't about US. And our spice really won't remember very much of it before they are gone. Just enjoy the contact you have and know that the kids are not going to be there to help you - in person or emotionally. Some will, some won't. My girls were there - Diane was my co-caregiver until she died. I'm still coping with losing her. My other daughter does Skype. And we talk often. But she lives in London.
We have to come here and rant and rave when we get mad and hurt...no one else understands as well as we do!!!! AND we do have to have the support of other spice who understand what we are going through....
My relationship with my sons is as before AD - because I kept my mouth shut to them...They have both asked me to come and live with them - I don't plan to, but it is nice to be wanted! <grin>
Mary is right about our family using survival techniques. We see our spice gradually fail-they don't. When they do see a parent failing it scares them. I think it is wise not to force the issue. We will lose our LOs but let's not lose our kids.
mary you did well to hold your tongue.. it has paid of in the long run. i doubt i could do the same.. grin.. :) i usually blast everyone in my path!! but its very good advice.
Mary--I understand everything you said to Mimi, but I disagree on one thing. You said "It isn't about US". But I think it is about us too--the caregivers. That's why studies have shown a higher rate of dementia in spouses who have cared for their partners with dementia; higher death rates, higher incidence of other illnesses. It has been well documented that doing what we do takes a toll on our well-being that is greater than caregivers for any other illness. So doesn't that make it about us too? The only way this situation will be improved, IMHO, is if everyone (families, government, medical community, etc.) gives people in our shoes more support.
On the other hand, I am convinced that there is no realistic way a parent can get a child who is emotionally distanced from the situation to come to grips with it.
This is my fourth up close and personal dance with this disease..first my mother died of it, then my uncle then an aunt by marriage and now my DH. I called my mother every week as we did when she was well and I knew she could not bring up things to talk about so I became an expert at small talk with her. For my uncle, we went to visit them at least once a month to help my aunt with little repairs and for my DH to take my uncle out to play golf and make sure he won the round when all his good buddies dropped him like a bad habit. My aunt was not close in terms of geography but I called her, wrote to her, little pretty cards as I did for my mom, just to give her something to look at and enjoy as much as she could. Yeah it was hard to watch these special people vanish before my eyes but running away from it one loses what is left of their personality. I don't intend to rub the girls faces into this..either they care or they don't. Two do a pretty good job most of the time to communicate with their dad. The other is too busy enjoying the good life. What she is missing because she doesn't seem to want to take the time out and adjust her priority list is that while her dad is forgetting what some words mean, and he walks slowly, his wit is very much in tact..he can be very funny. He is of good cheer all the time. Time with a LO while they can chat and enjoy company and look at pictures is the treasure she and others who remain distant will lose..they can't get it back. Sure it hurts to see a parent go through this or a much loved uncle. I have already been there and I miss them every day and marvel at what accomplished people they were. But losing a spouse is a whole nother thing and it is much worse..we lose so much more. I am not asking them to come and be full time caregivers. I am asking that they pay attention to the dad who did so much for them, to talk to him, to go to a lunch with him before the day comes when he can't do this at all. With the one who has the skype we have had breakfast while they ate dinner over skype! What a hoot. But I am not going to beg or plead or remind anymore. AS the detective said in the old series Dragnet, " just the facts mam, just the facts". That is what no 1 is going to get..and as for her great adventures I'll just tune them out..change the subject or lay the phone down and go ring the door bell..I won't want to waste my time listening to her highlights. This might sound cold on my part but I just can't go there...Go enjoy all the wine fields and mountain climbing and trips to the sea shore and whatever else..but just don't tell me about it when you are not making time for your dad. I do think I agree with a lot of what Mary* says but I also agree that a good deal of this is about US too.. And there is another adage that is well worth remembering " what goes around comes around" and one day when someone else might need support, it may not be willingly given if given at all.
Mimi, you have been the good Mom, wife and caregiver to others besides your husband. You have been the example you want your children to learn from. When this disconnect happens it's heart breaking, it tears your heart apart. Then like Scarlet O'hara you pick up the red earth of Tara and move on. You survive, your new lesson to them......I will survive this disease and them, I will show true Love and compassion to a wonderful man, their father and when his life is over I will know that I did all that I could do and I will return to you stronger and show my life had purpose, compassion and love (and exhaustion). To your children your strength will be a constant reminder of their lack of being good children. And I do believe what goes around will come around. Mimi, you take care of you and when you let this go as you must to have energy to survive this path your heart will lighten and the dark cloud will be theirs and theirs alone.
Terry, that was beautifully said. Mimi, you have been exceptional. Most people are not as giving as you have been to other Alzheimer's relatives. You are strong, and will make it through....knowing you did everything you could for both you, your husband and your family. There will be emotional ups and downs - times you will want to throw your hands up, times of a joyous moment that you will remember always. We'll be here for listening, and for support, and for hugs ---
Mary* and Terry54, Now my monitor needs cleaning..you brought tears to my sad blue eyes with your loving comments of support.
Today has been harder than most. Finally got DH to the foot doc..he puts off or refuses to tell me when something hurts etc...he is diabetic and I have been through my dad's loss of both legs because of wounds that would not heal...and his brother also lost a leg because of diabetic complications...so anyway sure enough there was a little irritation noted two weeks ago that was more problematic now..got some medicine on it and told to use this genetin blue once a month and to keep a little cotton between the toes to prevent more trouble. If it gets infected his risk of losing a toe or more is very real. He does not recall his brother lost his leg because of this sort of situation. If that were not enough no sooner had he finished breakfast then he was ready to go out to lunch...I have been telling him since yesterday we are going out tonight for dinner.. There are words that he does not know the meaning of here and there now and the use of some items either in the car or in the house..so the disease is progressing. Our girl no 3 was here day before yesterday and she reveals her observations that he is slower walking, and forgets more, more repetition etc. She is the one who reinforces what I tell the ones living overseas..one over the great pond does get it the other is divorced from it all which is why my dander has been up because so often he has helped her in the past in more ways than you can imagine. I know she loves her dad but she should be willing to shoulder some better effort at conversing with him while she can.
"When people walk away from you... Let them go... Your destiny is never tied to anyone who leaves you, and it doesn't mean they are bad people. It just means that their part in your story is over."
Vicki I agree when people walk away ....let them go .....they are not worth your time or energy. Our destiny is tied to those we love and are caring for. But these people who walk away are bad and I don't give them a pass. Bad doesn't mean evil, I think it means weak, self centered and scared. When you turn from helping a sick person for what ever reason you choose to justify it with excuses. There are many ways they can help if they can't do the respite/visit to their family/ friend. It's all about choices and we all answer for those choices some day. But wasting energy on these people a complete waste of time because they choose not to help. Placing energy for the important things, care of our spouses and care for ourselves, we need to survive this Marathon :) And every day I remind myself that I am lucky and bless for many reasons, I have had 25 years of love from an amazing husband, even if he can't remember it, I am lucky 'cause I can :) The moment is where I live .....exhaustion is my enemy that I can control, Alzheimers is the enemy I can't.
Mimi, your daughters may just be in denial. They may just be able to pretend all's right with the world if they don't have to confront it. The sad thing is that they will have to confront it sooner or later. I have the same thing with my 3 step-children. The oldest calls and stops about once every 3 months. The middle one has said such vicious lies about her dad that she is no longer permitted here. The youngest one showed up about a month ago after at least 2 years of not seeing her dad at all and was crushed because he did not recognize her. I had always told them they could see him whenever they wanted. The youngest I told just last week to do whatever will give her peace when all this is over. I have 3 children of my own who adore him so it makes no difference to me. My youngest lives with me now. My son lives 3 minutes away and can be here with a phone call. And my oldest just moved back to town to be closer. He actually claps when she visits. He applauds the arrival of favorite people. We are only accountable for ourselves and I will waste no time or energy on things that I have no control over!
I hear you Linda and everyone with your sage advice. While I know the kids love their dad, and two do keep in touch to some degree, I think they do hide from this and as you said, they will have to figure out how to find peace when it is over, whenever that may be, maybe the day he does not recognize the one least in contact in particular will have a hard time..When she does write, she sends letters overflowing with admiration but this is too few and far in between especially when a continent and an ocean are in between.
I cheer your kids, Linda, for showing their stepdad so much love and attention and yes, when my beloved uncle no longer knew my aunt's name nor mine, he knew us and smiled,clapped his hands and called her " his sweetie" and me " oh you are the little one"...I have wonderful memories of both of them even during their hardest times. There is no price on that.
I Know kids who are not as involved or involved at all will learn this lesson the hard way. And we can't help. So Linda, like you with the one most distant, I will run silent run deep and only when she surfaces for air and asks about how he is will she get direct info from me. Otherwise she can hear from her siblings.
I don't have to feel guilty or try harder to get her attention..and I know I am not alone in this fight.