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    •  
      CommentAuthorNikki
    • CommentTimeSep 22nd 2013 edited
     
    I read this on facebook yesterday....

    "Like it or not.
    if you are a family member
    or friend of an alzheimer's caregiver
    and you are not helping them
    --you have abandoned them.
    I am sure this sounds harsh.
    But, it's not even close
    to the harshness
    of your own behavior."
    Bob DeMarco
    Alzheimer's Reading Room
  1.  
    Ouch! So true -
    •  
      CommentAuthorNikki
    • CommentTimeSep 22nd 2013
     
    Lynn lost his oldest sister a couple of weeks ago. While talking to his younger sister whom I am very close with, I told her I wouldn't be attending the service. She abandoned us. At first (2003) I would call with up updates and send emails, but soon the calls were not answered and messages were left unanswered. She lived locally but had not seen her brother since 2007. When he was in the hospital I would call because she lived right across the street, it was my hope she could make that effort to come see him. Not once did she come.

    When Lynn was in the hospital last month, I called her again. I just felt it was the right thing to do..... she did not return the call or come visit. I am saddened that she died, but I lost her long long ago. She didn't just abandon Lynn, she also abandoned me. It turns out there wasn't a service so I was relieved of any guilt I might have had by not going to her service.

    His daughter was talking to me about if there would be a service and I told her I wouldn't be going and why. They were not close having only seen each other a handful of times. She asked if there was an obituary and I told her I wasn't sure... and this led to me saying that I was considering not even having one when Lynn passed...

    This led to a whole conversation where deep seeded resentments I thought I had dealt with came back to the surface.

    I told her how if it were up to me alone there wouldn't even be a wake and only a private service. She was aghast and said I HAD to let people come to share their love and pay their last respect to her father.

    To which I replied..... Respect!? You want to talk to me about respect???? These people you are soooo concerned with, his family, his lifelong friends, these are the very people who abandoned us when we needed them the most!! Do not damn well talk to me about love and respect!

    I went on to calmly and rationally (while biting my tongue and holding my rage at bay) explain to her how deeply it hurts when people you thought loved you just turn away from you. How it hurt her Dad when his lifelong friends stopped calling, visiting and inviting us to gatherings. (back when he was aware).... How it cut to the bone when even family did not come to see you.

    And God help me, the words were said....... but it is so difficult for them to see him this way...........

    I about lost it...... but with a choked up voice said "Just who do you think you are saying this to? I am his wife, his very best friend.. do you not think this has destroyed me?? It has been beyond comprehension difficult... but I did NOT abandon him!!!!!! Please do not expect me to feel sympathy for them... they abandoned him, they abandoned me. Even when he did not know who they were, I DID! It would have mattered to me!

    That the time to show him love and respect would have been when he knew who they still were, when it would have mattered to him!! I do not care at all that they would want to come to his service to pay their respects, I do not care at all if they find no peace. In fact, I hope they choke on their guilt.

    WOW.............. I really thought I let most of the anger go.... and I have for the most part, but this... THIS still cuts me to the core.

    I will have to work harder on letting this go........
    • CommentAuthorbqd*
    • CommentTimeSep 22nd 2013
     
    We force ourselves to appear outwardly calm to our LO's and to those of our friends and family that are interested enough to stay in contact with us.
    But underneath our calm exterior is a raging h*ll of emotions - bitterness, resentment, anger, hatred, loneliness, sadness, regret, all seething together in a maelstrom of stressful turmoil.
    And until we can bring all of those emotions to the surface, like you did, Nikki, I don't think we can every find peace.

    Hugs to you
    Bonnie
  2.  
    Well said bqd! And Nikki, I am so glad you got to hit that nail on the head. I wish we all could have the chance to spill our guts like that.
    Just last summer when everyone else was having beach weeks and travel etc and fun fun fun,( and I am talking family here) no one even asked if I were taking time away nor did anyone volunteer..This summer I didn't go anywhere either and I am glad I was home as it was my last summer with my DH...he died 6 Sundays ago. I would not have missed a single day with him. Now all I do is miss him...and everyone has gone back to their lives and the kids are dealing with the loss of their father in their own ways...keeping really busy so they don't have to think so much but feeling the loss all the same...I stare the loss in the face every day with all the legal stuff facing me now....
    So good on you Nikki for clearing the air...don't feel bad and don't feel you have to work on letting the frustrations go...just let the whole damn lot who didn't give a flying fig about you and Lynn when he became ill just go to He77...
    You done us all proud!!
    • CommentAuthorabby* 6/12
    • CommentTimeSep 22nd 2013
     
    This reminds me of the reaction I got from a couple who were "very good friends". We shared holidays and vacations for many years. These evaporated during H's last four years or so.

    When they and I spoke after H's death, they expressed that they stopped contact because they felt my husband drifted away from them. Oh-kay. He lost his work, his identity and everything else that someone with dementia loses. But, how could he have had the nerve to lose contact with them? A person with dementia not focused on them, can you imagine?

    "Well," they said, "he drifted away from us so what else could we do?"
    • CommentAuthordeb42657
    • CommentTimeSep 22nd 2013
     
    Nikki, I can't believe how much anger and resentment one person can feel. Every time I think I have let go of it there is proof that I haven't. I can go months without feeling it and then "some well meaning person" will say something dumb and there it is again!(my old friend) Abby, people just don't get it and they won't until it happens to them and then sometimes I wonder...
    • CommentAuthorabby* 6/12
    • CommentTimeSep 22nd 2013
     
    Deb,

    ♥ I know you know. Wishing you a good week.
    • CommentAuthorWolf
    • CommentTimeSep 23rd 2013
     
    Nikki,

    It's far more important for us that we're true to ourselves. That truth is saying what really happened rather than once again bending yourself out of shape for the comfort of others.

    Those that understand know and those that are protecting themselves pretending they're not don't and resolutely won't.

    When I said I forgive I didn't mean I forget. None will be at her funeral except the very few that fought with me, admitted they couldn't handle it to my face, or just shut up. No one who lied to me about what happened (remember things altered) gets my warmth going forward.

    Don't be hard on yourself that you express the truth that Lynn didn't get more support from his own kin. These things where we defend a position are important as things we do have compared to the things disappearing and even if they are conflict - they are things in our lives and those should not be discarded before new things are building. Unfortunately that's likely to be some time.
    • CommentAuthorlindat
    • CommentTimeSep 23rd 2013
     
    so true we have no contact with any family I warned his sisters that they would have to keep in contact neither did one of them passed away this year and he showed no emotion at all the other one dosent try . its funny cause a few years ago he lost a brother and a couple of sisters and they all expected him to help them out with final stuff now hes sick and sa la vie my own family has done the same to me its like we really didn't exist except to help people when we couldn't anymore they dumped us even our kids one spends more time in jail than home but when home were supposed to help him ok then theother is there off and on more off
    • CommentAuthorLFL
    • CommentTimeSep 23rd 2013
     
    Nikki, so sorry you had to deal with the anger and resentment again, but many of us here know exactly how you feel. Good for you that you were straight forward and honest about their abandonment and how it made you and Lynn feel. I feel the same way towards DH's family. They don't call, visit, send a note, NOTHING,. BUT, we do get wedding invitations or notices, birth announcements with the expectations that we will not attend but send money and/or presents.

    A while ago I said I have stopped "actively hating" them, but if I'm being honest with myself, I still hate them but don't let their abandonment consume me like it once did. When DH passes, I will not notify anyone in his family and will have a private service for my sister and me. If I have an obituary published it will not be until several weeks after DH has been buried and most likely will NOT include reference to his surviving family members. They are dead to me just as he and I are dead to them.

    Thank you for saying what I would love to say to my in-laws but I know I will never get the opportunity. And I am certainly NOT going to allow them to assuage their guilt by allowing them to "say goodbye" at a funeral. They've already said goodbye to both of us.
    • CommentAuthorlulliebird
    • CommentTimeSep 23rd 2013 edited
     
    Nikki,
    I know exactly how you feel and the resentment and anger will sometime surprise me and totally smack me in the face when least expected. Good for you--- so glad you were straightforward and allowed yourself that opportunity to express the deep hurt of betrayal and abandonment. I don't understand (nor will I ever) how family and friends can skate away without remorse. It totally defies reasoning.

    LFL, Just last week I was mentally planning the "last goodbyes". His family (with exception of one son) and mine have said there goodbyes along with many longtime friends. There is no support : there are no excuses. I decided that I will not notify his family with the exception of his youngest son. There will be no obituary published. I will have a cremation with a private service for only a select few (and few there will be). They all abandoned both my husband and myself (at the same time) when the diagnosis was officially declared! As far as weddings HA...his daughter had a wedding ceremony just recently and she requested "it would mean so much it dad could go" I made the arrangements that her father rent a tuxedo (per her request) and we attended....three weeks later Father's Day arrived. There was no phone calls or cards from her or her siblings (exception youngest son) . What a flippin' charade! Goodbye....(not so nice) knowing you...and don't left the door kick you in the ...on the way out.
    •  
      CommentAuthorNikki
    • CommentTimeSep 23rd 2013
     
    I just love this group! Where else can you express honest feelings and not have someone tell you how awful you were for speaking the truth!

    I was saddened to read some of your posts, it is hard for me to understand friends and especially family behaving in such a manner. We might have been abandoned by many, but nobody purposely set us to hurt us or make my life more difficult.

    I hate only one person in this whole wide world. It is such a strong emotion and one I really do not like to have. But it is real, it's how I feel so there is no point in denying it. But I do not harbor feelings of hate for the people who abandoned us. It just hurts.

    Last month a friend asked us this question ..

    "Patients and caregivers are abandoned not only by friends who don't know what to say, but by family members who are in denial, angry and fearful they are facing the same future. Their solution is to abandon the people who need them the most.
    When the inevitable happens, these same people will want to rally around. What are they looking for? How do you take them in your arms and console them and assure them it was okay all those months and years? Will you try to relieve them of the guilt they are feeling? Or will you just turn and walk away the way they walked away from you and your loved one?"

    It gave me a lot to think about... As I wrote in Joan's thread there are people who I just do not care enough about to go through the work of forgiveness and find our way back to friendship. I don't hate them or wish bad things for them, they are simply insignificant to me now.

    I did wonder how I would feel about his family though. Well his sister's death made me realize how I would deal with that. I would not have gone to her service and that was not being petty, that was being true to myself. I can not and will not put on an act for anyone. Not even family. But, there is no point in holding ill thoughts towards the dead! It can only hurt me at this point, so I have let it go.

    His children I make an effort to keep in contact with. Mostly by texting and sending pictures of their Dad. I do this mainly because I want to remain true to the person that Lynn knows me to be and fell in love with. I guess in a way this is my way of honoring Lynn. They visit rarely, if at all. I wont lie and say it doesn't hurt, it does..........

    But I did get my answer to how I would handle this, when we thought we might lose Lynn, I went immediately to consoling them. When his daughter came to visit, I held her as she cried. The big difference between his children and his friends is that without a doubt I do know that his children DO love him!! I do not know what they are wrestling with... and though it is not what I would do, nor how I wish it could be... it is what it is and I came to accept that long ago. I harbor no ill feelings towards them, we all love Lynn and that is the only important thing to me.

    My family never deserted us. Lynn was included in every family function always. It did however hurt me a great deal that only one of my 6 siblings has ever gone to see him at the nursing home. One of my sisters wrote me and then called me sobbing, she explained it to me in a way that took away the hurt. She told me that though she knows it hurts me more than it could possibly hurt her, that she was sorry, she just did not have the strength and courage it would take to go see him now. It wasn't a copout, it was a blunt truth said in love. I know she still loves Lynn, she just can't handle it....How can you hold that against someone? I find I can't.

    I would much rather someone be honest with me. I can forgive almost anything. What I can't seem to forgive is the "friends" who just turned and walked away from us like we never existed. These are the people I have no sympathy for. They had none for us....

    Thanks for letting me vent, I feel a whole lot better now :)
    • CommentAuthorMim
    • CommentTimeSep 23rd 2013
     
    Nikki, I don't know you, but I love you!!! I admire the way you can just let it out (like we all need to do), but you are a sweetheart to everyone here.
    I think those negative (beyond negative) feelings smolder inside for a loooong time & we let a little go at a time. Maybe even a lifetime. I will have to let you know if I still feel that way when D.'s children show up when he passes. It's been a strained relationship for years & years, his daughter offered her help when I was in the hospital this summer, but his son never calls. I've tried to reach out, had them to our home for dinner, but he is always "so busy". BS!! Nobody should be that busy or driven for whatever reason.
    My doctor & I were just talking today - as you get older, you care less & less what someone thinks of you. At my age, I'm just like Hallmark's "Maxine" - I just don't give a @%*# !!
    • CommentAuthordog
    • CommentTimeSep 25th 2013
     
    Nikki-

    Your sharing helps us all. I have struggled with this issue for sometime.

    Similar themes for me, plus a theft by a family member the day my husband was released from the hospital after his diagnosis.

    When my husband passes it will be a private service as well, with myself and his most caring caregivers. And that's just fine with me.
  3.  
    Oh Nikki, I am so proud of you. You had every right to tell her how things are. You are tough and amazing.
  4.  
    That is what I love about this site! You can let it all out!! AND YOU NEED TO DO SO!! Keep it up!!! Don't let it stay in and fester!

    After your spouse are gone, and the service is over (if you have one) - and you mourn, and you take care of all the paperwork, and can actually THINK about doing anything remotely social, MAKE NEW FRIENDS!!!

    Those who deserted you don't derserve you. Period. Life if too short to waste time on "acquaintances" because they weren't your true friends to begin with. This goes for relatives too!

    It has been two years since Dave died, and I have several new friends - to go to lunch with, go to the movies with, etc. And I'm traveling with widows from here!!! My new family!!! The few who stuck by me, I've kept! <grin>

    I am no longer wasting my time with people who don't deserve my friendship any more. They are a part of my past. I have forgiven them (some are truly weak), but I won't forget.

    Way to go, Nikki!!
    • CommentAuthorPavane55
    • CommentTimeSep 26th 2013
     
    All of your sharings are just what I needed right now. We have had some or most of the same experiences. For me, this crazy disease has made me a stronger person to myself and our values. I thought I was the only one in the world that would consider having a small, very small - maybe only me - private service and no obit. I usually have a positive attitude, but today, all of the ugly feelings are surfacing. I was feeling like I just wasn't a nice person because I had such a "bad" attitude today. Thank all of you for being so honest. It has helped me along this path of sadness, loss and being lonely. Even tho we don't know each other in person, I feel and know that YOU care and understand. Thank you.
    • CommentAuthorJoisey guy
    • CommentTimeSep 26th 2013
     
    When my wife had to stop driving around Memorial Day, I sent the following email to many friends and relatives. The response was overwhelmingly positive and many, not all, of the recipients stepped up and have been helping:

    "Over the last few weeks, --- has made the difficult decision to stop driving for the immediate future. It will probably come as no surprise that she has been suffering from some emotional issues for several years, and her recent ....problems have compounded the problems. Without going into too much detail, .... is suffering from serious short term memory loss. It's difficult for her to remember details of events or your answers to questions she may have just asked. She can't stand being alone for even a short period of time, so obviously, she relies on me for almost everything, and to schedule her days.

    Many of you asked if there was anything you could do, and to call if I needed anything. That's not something I can easily do. Its just difficult for me to call people on ---- behalf on an individual basis. Trying to schedule lunches, shopping, theater, or making plans for the weekend for her is just something Im uncomfortable with.. All I can ask is that you think of her and do what you can. ---- certainly knows who everyone is and thoroughly enjoys all the things she used to enjoy. The only problem is that she can't always remember all the details.

    We're exploring various options, including adult day programs and "companions" for a few days per week. All this is rather sudden so it will take some time.

    I emailed this to those of you I had emails from, but there are others whose emails I didn't have. Out of respect for your privacy, the recipient list has not been shared. The 800 lb gorilla is out of the room, so if you have questions, feel free to email me, or call me at ..."
  5.  
    There is another group, which some of us (only a few, I hope) had to contend with. I was one of those few. All through DH's Mental Illness and he Vascular Dementia, my family was there---not always physically, but available and inclusive. Our Daughter was always behind me(even when she lived in CA, we're in MI). Not only were there friends and some of his family who abandoned us, some of his family were even worse--they interfered. DH needed the connections to his family so I didn't feel I could cut them away, but dealing with their actual interfering actions was a horrible addition to the load.
    Just a couple examples--it took 3 years to get them to stop trying to convince DH "to get off--stop taking the drugs"-- his prescribed meds (bad chemicals). He perceived "drugs" as street drugs but accepted his meds because they were meds--not "drugs". After being told he could not have a power chair to go out and about on ("He won't get lost; he's lived here all his life") because it wasn't safe (I--his Guardian, told them) they gave it to him anyway, behind my back and persuaded him to keep it a secret from me.
    Their interference continued through the Memorial Service. I countered the important things. They tried manipulating final plans through DH (discussion stages) and later tried to manipulate me into doing things as they wished rather than honoring what DH wanted and what my Daughter and I planned.
    I set my mind on doing what I believed to be "the right thing". I reserved the Interment ceremony to be private--just DH and me. There was an obituary notice, and the Memorial Mass with an hour's visitation before, and luncheon after. A month after the Service, the afternoon after the Internment, his youngest sister called--a 5 min. conversation. Asked how I was doing, and said she thought she should check on me. The remaining 3 minutes were all about her husband, her and their dog. I have heard nothing from any others of his family since--it's been 15 months.
    I feel no anger or pain toward those who disappeared from our lives. The anger and hurt toward my in-laws has greatly faded. I was never really hurt, long-term by those who left---they couldn't handle it, and I didn't have the time or energy to spend helping them deal. In a sense their abandonment was a blessing in disguise. I don't miss the in-laws and have no desire to check back with them. I have my family, the friends who stayed, the friends who joined us during the journey and stayed, and now I'm making new friends.
    I'm doing my best to put the anger and resentment behind me because I have a future to fill, and I want it to be good. For me the abandonment--both groups-- turned out to be a blessing.
    •  
      CommentAuthormary75*
    • CommentTimeSep 27th 2013
     
    Carosi, you always have so much wisdom to offer that I welcome your posts. You may remember that I had a lot of problems with my husband's ex-wife and kids, problems that threatened his health, well-being and care. I'll always be thankful for the support I got from everyone here as I went through it.
    You wrote, "The anger and hurt toward my in-laws has greatly faded." Me, too. What a relief to let it go.
    Now on to living!
    • CommentAuthorJan K
    • CommentTimeSep 27th 2013
     
    The hurt on behalf of my DH is harder to deal with than people abandoning me. Concerning his family, he's said several times, "I guess to them I'm already dead". Not only do they never inquire how he's doing, we don't even get so much as a Christmas card from them any longer. The sibling who agreed to be backup caregiver in case I died, moved to another state and never sent us a new address or phone number. We found out about the move through another family member. DH was so hurt he couldn't even speak for hours.

    Getting over the feelings about people who made DH feel like that will take a while longer, I guess. I'm not there yet.
    •  
      CommentAuthormary75*
    • CommentTimeSep 27th 2013
     
    It's taken the almost 2 years since his death. We are doubly hurt when we see our our vulnerable husbands hurt.
    How are you doing? You've been in the saddle a long time. Love for me to you.
  6.  
    Nikki I could just experience each of your emotions as I read them. I think we do bury it a bit until it surfaces again. You are good and true and I am glad to see you let off steam. Your halo got a bit crooked and a bit of rust, but I know it is straight and shiny again, maybe just a little dent on one side.

    Jan K how utterly painful for your husband. I remember when Dado was in the car one day, waving goodbye to awful people that used to be friends, and they did not wave at him. He just kept waving.
  7.  
    I know the hurt he feels, my dh has felt it also. The fact he doesn't hear from 4 of them is bad enough. He used to call them, they didn't return his calls, now he doesn't try. But the worst was when one came to stay 2 days with him while I was gone, my son came the other 2 days. She sent her husband out of the room and proseeded to tell him he had been a bad daddy, and almost ruined her marriage because of it. He was gone all the time ( he worked 4, 10's as a state trooper, 3 days as an over the road trucker). So she was right on that point. Had 6 kids. And he and her bad mommy(who is deceased) yelled a lot. Hurt him terribly, and I wasn't there for him. He still remembers that after a couple of years.
    I don't understand, he won't always know them, you would think they would at least call weekly.
    Bonnie
    •  
      CommentAuthorNikki
    • CommentTimeSep 28th 2013
     
    Pavane55, isn't it nice to feel understood and yes, we DO care!

    Mim, such a lovely thing to say, you are loved as well ((Hugs))

    Mary* So wonderful to hear from you!!! I miss your wisdom and strength to lean on ((hugs))

    Awwww Coco, that just broke my heart for your and Dado.............

    Jan, I had to think about what you wrote for a few minutes... Lynn was aware then and it did hurt him, a great deal. I think this would explain why I am having a harder time forgiving his friends.

    Bonnie, yikes! I just can't understand people, no matter how hard I try.....

    I feel better than I did, thanks for listening :) My resentments are tucked away again. Not forgotten, just not controlling me. I really liked what you wrote Mary "Those who deserted you don't deserve you. Period. Life if too short to waste time on "acquaintances" because they weren't your true friends to begin with. This goes for relatives too!"

    I plan on doing just that! :D
  8.  
    My DH has 4 sisters and a brother that he never sees, unless I make the effort to take him. Which i do occasionally when he asks about them. I tell myself, they are old, which they are. My DH is the baby at 74. I am 67 and still able to do it but it does bring out the resentment in me. They hardly ever even call. one sister will call every few months, but none have offered any help. Three of them are 30 min away. My family all live out of state, so here I am, mostly on my own.
  9.  
    Nikki, you know what I have been through with Lloyd's mother and two brothers and a few other people. The fact that they showed no genuine interest in him while he was alive was compounded by the fact they tried to turn his calling hours, funeral, and wake into a friggin' circus. I was devastated. I had been so very careful to have everything perfect and dignified and they had to trash it like the trash they are. His mother who had no job and could drive anywhere that struck her fancy could not even drive 20 minutes once a week to see her boy...BUT when she knew for sure he would be dead in a matter of days, I couldn't get rid of the bitch. She was your classic "attention whore". Had to come and suck up all the pity she could. You do everything the way you want...it is your call. If they don't make you happy or bring out the best in you, cut them out of your life like the cancer they are. You and I are kindred souls. My biggest kiss-off was having him cremated and bringing him home with me where he belongs. My thoughts were if they couldn't spend time with him while he was alive, I would be damned if I would let them spend time with him after he was dead. I am moving on without those losers. Screw 'em!
  10.  
    I guess there is still a little of the savage beast in me...whoa, momma!
    • CommentAuthorxox
    • CommentTimeOct 4th 2013
     
    So Linda, tell us how you really feel.
    • CommentAuthorJazzy
    • CommentTimeOct 4th 2013
     
    YAA!! HOO!!

    What a mouthful that was. I just posted a thread about his sons, but not so up front and out there. I think what you said applies to lots of caregivers. This is such a great place to just let it all out.
    It feels great to just blow off the steam that is building up!!!
    You are special and have given so much to care for your Hubby, don't let anyone pull you down. MOVE ON,GIRL, MOVE ON!
    Hold your head up and live.

    Hugs

    Jazzy
  11.  
    What can I say, Paul? You should well know that I have never been one to mince words. I like to be up front and leave no room for doubt. No one knows that more than my little sweetpea Nikki. I would venture to say I have the reputation for saying the unspeakable. It's my gift. Hahaha!
  12.  
    Linda, those who have followed your saga know well the hardships that your Lloyd's "Lot" put upon you and how difficult they were during his life time. Were I in your boots I would have done the same thing. Like you, don't ask me how I am if you don't really wanna know...I won't sugar coat it either. One person recently asked me in a somewhat thoughtless fashion, how I am...as though I should have moved on or something. I just said in return, " Well how would you feel just 6 weeks after YOU buried your husband?" This person, I should mention is twice divorced with 3 adult kids....
  13.  
    Yeah, the people that have the attitude that I should move on and quit playing the "dead husband" card can kiss my butt!
    • CommentAuthordeb42657
    • CommentTimeOct 4th 2013
     
    I have been having a lot of problems with anger and resentment and I have been talking to an elder in my church and he has been telling me that the anger and resentment is only hurting me because my H doesn't even understand any of these feelings. He acts like he doesn't care because he actually doesn't due to the Alzheimer's. I wish that I could totally get this through my head, I know in my head that he is not my husband any more but I can't convince my heart. If I could convince my heart I don't think any of this would bother me anymore(or at least as much) I have as feeling that I would have to be perfect for that to happen and it is not going to happen.
  14.  
    WOW, wish I could speak my mind like that. I think it just haven't done it. I keep things to myself.
    Bonnie
    • CommentAuthorbqd*
    • CommentTimeOct 5th 2013
     
    Me too, Bonnie
  15.  
    Hi Deb,
    I was the same as you. I never got to the point that I understood in my heart that this was not the same person. Old grievances could no longer apply. I wish I had. It would have made life so much easier for me and more importantly, for him.
    • CommentAuthorLFL
    • CommentTimeOct 5th 2013
     
    Yes Deb it is hard to convince your heart but truly it is the disease, and yes, it's hurting you more than him. I hope you can find some peace.
    • CommentAuthorBama*2/12
    • CommentTimeOct 5th 2013
     
    Deb you wouldn't keep hitting your head against a brick wall because it hurts. The same principle applies here. I know it's easier said than doing it. I was still trying to reason with Cordis right up till the end.
  16.  
    Me too, Bama. Looking back, I don't understand it but there it is. I was also one of those that in the early years, I was sure if I just figured out why it was happening, I could fix it. I look back on the early journals and they are colour coded. I indicated the amount of exercise, the amount of sleep, whether it was sunny or cloudy and what the barometric pressure was. I was sure I would figure it out. I had flash cards and would coach him before each visit with the neurologist. We went over what the street was , what number the office was, who our Prime Minister was etc. It was so damn painful to see him struggling with the questions on the MMSE.
    • CommentAuthorLFL
    • CommentTimeOct 6th 2013
     
    jang*, well said. My DH is still with me, but I too did the same things early on. It is so hard in the beginning to wrap your head around not being able to do anything to "fix" it.
  17.  
    That is so true, LFL, and then later we regret that not only could we not fix it, looking back so far we feel badly that we didn't even recognize what was happening and then still later, as when we earn that * we tend to have to fight the regrets of not "being nicer, more sensitive, understanding " etc.....But we have to remember we too are human. Nothing about this disease is easy, none of it not even under the best of circumstances. And it is compounded when our LO is a really really sweet person and wants to spare us about how they really are feeling lest we should worry more than we do..That was my case. I was so worried about the memory issues and didn't understand fully the cardiac issues and some of the medications risks. I could see my Ozzie was declining but I gave it the wrong reason. The larger reason was cardiac. Now I clearly see how much he still had going for him in the memory dept. And there are no do overs. I really miss him.. It is 8 Sundays today and my kitties were never without their " dad" and when he went to the hospital on the 9th of Aug they were ok until it came to them that he was away for more than a few hours and they have been wild ever since. So even our pets sense things about our LOs.
    • CommentAuthorLFL
    • CommentTimeOct 6th 2013
     
    Mimi, you were a wonderful caregiver for your Ozzie, never doubt that for a minute. Yes, there are no do overs but you were great and I know how much you loved each other. Perhaps it was god's plan to end his suffering before the true ravages of dementia took hold.

    Ahhh, the animals ALWAYS know and sense his absence, but they know they have their "mom" and you will comfort each other during this very difficult time of loss and grieving. Be kind to yourself, his loss is so new and raw but your wisdom shows you are a strong woman and you will make it to the other side of this disease.

    May the days ahead be easier and kinder. (((HUGS)))
    • CommentAuthorlulliebird
    • CommentTimeOct 6th 2013 edited
     
    Yes the resentment is still there, but I am finding it's impossible to change or fix "them".

    They don't care about our spouses or our situation so why should we waste our valuable time, health, and energy on fuming? So done with them.

    Movin' on .... they can eat my dust
    •  
      CommentAuthorNikki
    • CommentTimeOct 6th 2013
     
    Linda, you really need to work on being able to let your feelings out. It's not good to bottle them up that way!
    Bah-hahahahaha! I have always loved your raw honesty, don't change for anyone!!
  18.  
    Nikki, not much chance of that happening, as you well know. I try to be diplomatic and word things nicely; but once in a while, I just need to drive my point home!
  19.  
    Thanks for your kind words, LFL..Yes I fully agree that God was good to both of us in that Ozzie was indeed spared further descent into any of his health issues which would have just brought him down, destroyed his morale. And I am spared having to watch this destruction of a fine man.
    Yes the " girls " do amuse me and of course there is a reason to do things...they will demand it! Gabrielle especially. She was the runt and she is truly my kitty...she will always stay with me until I pick her up and hug her in the morning whereas her sister, Xena, will head on down stairs...ready to romp and fly through the house with the greatest of ease. I do have to tone them down and then they are banished to the garage for a spell. There are lots of things for them to climb and snoop around.
    • CommentAuthorJazzy
    • CommentTimeOct 17th 2013
     
    Nikki

    My DH was ticked at our children for not looking after me and put the verse about abandoning the care giver on his Facebook page and the children must have seen it and I am now getting calls to see how I am and offering help. I had told him about it and he asked me to send it to him. He thought it was great and it sure stirred things up.

    Thanks for sharing that with us.
    It's just sad that now he is in LTC and my health is starting to get better and I sure could have used this attention and help when he was home. Oh well, better late then never.

    Jazzy
    • CommentAuthorring
    • CommentTimeOct 17th 2013
     
    Oh my gosh Jazzy how nice of your DH. It seems because of this disease you have had more than your share of mean behaviour. I love when we get a glimpse of our "real" spouses.
    I'm glad your health is starting to improve and hope that you do find happiness and a support system when you move to your new place.