Update - I've been very frustrated and stressed over the lack of caring and lack of support from my husband's children since his diagnosis. Actually they were always very distant visiting one or twice a year. Rarely calling. Since the Diagnosis of Alzheimers stage 5, I thought I was doing the right thing by letting them know l what was going on and informing them of the disease. They have been unfeeling, uncaring and act like he is great and somehow I am the problem because I prompt them to engage and they don't want to because it is not who they are.
I finally went to talk to a counselor the other day. She recommended I write a paper journal and stop communicating with them through email and facebook. I have blocked them from facebook and no longer write them. It has been two weeks and they don't write or call him. She recommended it they want to know about their father they can call. I am separating them from the rest of the stressful things we are going through right now as to not to let them add to my stress. I call my own mother, my dad is deceased, every day. I find it amazing that people are so self absorbed to not show love and respect toward their parent. But I actually feel better already knowing it is not my obligation to keep them informed. I am focusing on us and my children and grandchildren and each day we have together that is an good day. I think I am on the right track. I started my paper journal today and found it very relaxing.
Lakegirl, I am glad you are no longer trying to engage the step children regarding their father. It will only stress you out when they don't respond, call or visit. They don't care. Your counselor gave you good advice. Our situation is similar in some ways but it's DH's brothers. They never call or visit and frankly don't want anything to do with DH. I agonized over their lack of caring and concern for 3 years and all it did was make me stressed and angry. Then one day I made up my mind that if they didn't want to see him while he was alive, then they will not get to see him when he dies. DH will be buried without any notice to anyone in his family. Once I made that decision I was much less stressed and stopped actively hating them. In essence I freed myself.
I agree. I plan on burying my husband in my hometown at the Rock Island Arsenel where my father is buried and my mother will be. I am sure they wouldn't make a 5 hour trip anyway since they can't drive 1/2 hour to see him when he is alive.
This is a part of human beings I truly don't get. Yes, I can see in myself that there have been times when I have been not as caring as perhaps I should have been, but to just NOT CALL OR CARE no never.
If it was not for a few fine examples it would be so despairing. His sisters that supposedly were so close to their only brother, not only never call, but for a long time denied anything was even wrong with him. This also seems to be a pattern doesn't it? Then, when they finally came here to see him, and really SAW and knew he was AD, their main concern what what happened to any money he may have had? NOT< are you ok Patty, anything we can do. Now they have gone back to their island and not a peep for months.
Lakegirl I commend you on seeking help, and yet sorry it has come to this. What the hell is wrong with people, so self centered and judgemental. ? God help me, and us, to open our eyes to what is really important in this world, the reasons we are here..which more and more points out to me, to love one another, as best as we can.
I learned long ago a few truths about this particular phenomenon. Regardless of the reason for needing a Caregiver, the one who gets the job is either drafted or gets it by default---the parent, the unmarried chikd, the one who lives closest, or the spouse. The other relatives don't want to know. That's because they are either afraid it could happen to them; they'll catch it; are in denial,or reallyt don't give a rip. In our case, at first I tried to keep his family in the loop. Eventual;ly realized, they didn't want to hear it from me. Arranged for them to talk to hisDr, They didn't take advantage of that either. Over the yerts they noto nly didn't help or suuppoet, they actusally interferred. Even between his death and memorial service, they interferred. Si9nce then, his youjngest sister has called once--a 2 minmute check-in how was I doing? 5 weekslater. One other sister, theonnre who also has Learning Disabilities and has always told me to do what'sbest for him (only support) stopped over for help with some paperwork for Social Services. Otherwise there'sbeen no conbtact, amnd I am fine with that.,
As to how I dealt with the final arrangements--I did what I felt was the right thing to do. The service was as my daughter and I planned. Though they tried, they had no say. The burial was later--I reserved that for me. I gave each sister and his step-dad a 24x36 poster of pictures of him. My daughter also got one andI have the pictures. The best thing for me was to realize it wasn't my job to keep them informed; it was my job to take care of DH. In caring for him, I did have to deal with some serious ep;isodes of interference, but otherwise I let the connection widen. Now,there is no connection and that's fine with me.
We each need to find the best way to deal with this situation--best for our LO and for us--no one else.
Lakegirl, While my steps are not quite as distant as you describe, they will call but not once a week and unless we catch up on FB....... What I finally did was get the doctor's impressions, condensed it and sent each one an email with the date of the neuro visit and his observations. Period. I no longer feed them any information about him. If they want to know how he is doing, they have to call to ask. I had posted on my FB page some of my frustrations but it never caught on with them... One is in Africa,one in Europe and one on the other coast. And all of them have had a summer full of holidays and still are. The one on the other coast is planning to come out some time next month but I have no dates... I have been so wound up all summer to the point it has affected my health in that I have had some migraines and am manifesting symptoms of generalized anxiety. I am working with my doctor now to get that under control....first med didn't work and I took only two tabs...side effects were so so strong I could not function at all...just the worst.. But I recognize a couple of things now, I can no longer do this job alone and I am learning the ropes to find help and the second thing is to just dump what does not matter...thought I had been doing that but nope...not well enough. My bil is here now taking over the hubby and when we get him to bed later tonight we will sit down to figure out what I need to look for in terms of help I need around here, who to call and so forth...just getting started helps...but it is scary... It is a real eyeopener when you discover you are not super human and there is NO ONE to care for you if you go down...The LO might want to but can't..
Oh, before I forget...I went to college in the Quad Cities..are you still in the Quads?
I'm in Cannon Falls MN, but go to the Quad Cities alot because my sisters and mother are still there. I love the Quad's and am friends with many people from my high school class of 1966. We talk often on fb and see them at least once a year at an unofficial reunion. I might go live there again when something happens with my husband - they are so supportive. I was at the annual event last July - exhausted trying to move my mother to an different assisted living place but had to go for an hour. I talked so several people with whom I was close to and they hugged me and cried with me when I told them about Bob. I am only 5 1/2 hour drive from here. Where did you go to college there?
I so agree with other comments about our only obligation is to take care of LO's not ones who only care about themselves. I feel great support from you all. Thank you.
lakegirl. many of us here are in second or more marriages where grown step children are involved. and so many of us have the same situation of the non caring no calls or visits to their parent who is ill. most of us have opted to not pursue the family connection if it just is not there. we must learn the hard way that when one gets sick and needs constant care, alot of folks, friends and family run the other way. sorry you are feeling badly about it, but like everyone says we only have to care for our spouses not everyone else. if they want to know how their parent is let them find a way to get informed. divvi
Hi Lakegirl, I am glad you have reached a place of inner peace. Our situation is bit different as I am a lot younger than my husband Lynn, so his children are my age or older. I use to be tied up in knots that they wouldn't call or visit. He was such a wonderful father, and though he did deserve better than he got from them, I decided I had to let go of the resentments too.
After Lynn got diagnosed, they rarely if ever visited us at home. During the period of time when I was having TIA’s from taking care of him alone, I not only asked but pleaded for help. I asked for one day a month off. Just one day…. No one stepped up to help us.
When I had to place Lynn, well you wouldn’t believe the array of emotions I felt towards them. Mainly I felt anger and a sense of sadness for Lynn.
It took me a long time to work through my feelings. I finally realized that the only person I can control is me. For whatever reason they decide they can’t visit with their Dad, that is on them, not me. It wont be me choking on guilt when this journey is over.
Instead of calling them I started sending texts with pictures and updates. At first all four would reply, then that dwindled down to just two. But to this day I still send the pictures and updates about once a month. I do this for Lynn, to honor him if you will. I am trying to remain the person he loved and refuse to let other peoples actions, or lack thereof, change who I am.
Now the anger is mostly gone and in its place is a feeling of mixed sadness and pity for them. Lynn still knows me and on some level still recognizes my niece and nephew who visit him often. But he doesn’t know his own children, and I believe that is of course part disease, but mainly because they didn’t spend any time with him.
They were easy to forget. Sad really....
Though I do not believe it can possibly be any harder on children than a spouse, I do recognize that it is somewhat easier to “walk away” when you know the spouse is taking care of your parent. I guess in a way that can be taken as a compliment. If they weren’t confident you were taking wonderful care of their father, I bet you would be getting a lot of busybody interference.
Thank you for your support. I just had a horrible experience. I started a similar discussion on the team inspire site and many others told their story. The I got a comment from "sunnione" that said "You only see things from your side of things not all the work that we come and do for you. You are retired some of us have to work 14 hour days." I looked up the profile of Sunnione and it was a 55 year old woman in Burnsville, MN. My daughter-in-law. How hateful. These sites are for support and not for famlies to make comments when they can't even pick up the phone and have a conversation. My hands were shaking so hard, I could hardly type. I took my self out of that group and will no longer go there for advice or support. I am still shaking. So much for inner peace.
Awwwww lakegirl that really sucks! I am sorry you were subjected to such a hateful comment. I rarely talk openly about some things even on here because it is an open forum and everyone can see it.
So sad she had time and energy to pick at you but not to call to lend you support. Pffffft
If I may I would suggest you join our private group on facebook. No one except members can read what we write. Charlotte is the admin of the site and does a "background" check on new member looking to join. It is all spouse, mostly us who post here. I love it here! But there are somethings I need to talk about in private.
I can't seem to get into that Facebook group site. Could you please tell me how to do it. I do have a Facebook page, and searched from my page using your above address for the group. Couldn't find it. Thanks for any help you can give.
Just FYI Charlotte needs to verify who you are in order to allow you to join the group. Make sure you check your messages on facebook. Lakegirl, you provide your real name here on your bio page so I was able to let her know who you are.
Lakegirl--I have a similar situation to what you described, except stepdaughter is in her 40's. A professional counselor also gave me the same advice, close to 7 years ago (time of dx). It has been hard for me to detach because of the young grandkids, but this year, I've been making progress. Her advice was "find other children to be close with". I miss the grandchildren, but at least the other stress is gone. It is hard enough to deal with the loss of my husband--I don't need his daughter adding to it. I, too, tried to keep her in the loop in the beginning and bent over backwards to strengthen our relationship. I finally realized, all effort cannot come from my side alone. I am at peace with my decision. Like Nikki, I have rarely talked about this here because of it being an open forum.
My step children, in their 30s do not have any contact with their dad. His brother is also at arms length. I have come to terms with this. As I have found we are not alone in this. I always wonder, if DH was ill with something else would they be so distant? I will never know.
Lakegirl, there you are doing everything you possibly can and your DIL says that. How little she knows that most people on here would rather work 14-hr days than have to deal with this. So-o-o...SCREW HER! If people do not bring out the best in you and make you feel good, then it is time to be done with them. I have 3 children and 3 step-children. I cannot tell you the last time we saw his kids! Oh, wait, we saw his oldest daughter (40) in May 2011 when she came to stir things up at her dad's birthday party after most of his family had left because she didn't want to deal with them. A few months later, his youngest daughter (30ish) stopped by and he didn't even know who she was. She stood in the driveway and bawled and we never saw her again. Junior calls, doesn't call, is so wrapped up in his own screwed up life, he has no time for his dad. So, God bless my kids who are always here for him. My youngest daughter rented out her house and came back home so I could quit work and be with Lloyd. My son lives 3 minutes away and is a phone call away and takes us to church when Lloyd is up to it. (Been some calamities at church.) My oldest moved back from Toledo to Canton to be closer, but she works all over the country.The older grandkids all help when they can. And after our 19-yr. old grandson went to the Navy, his friends stepped up to help...they stay with Lloyd so I can go to the store, carry him up to bed when he can't walk, feed him, and pal around with him. His kids do not exist in my world and it is good!
Lakegirl, I was raised in Clinton IA and went to Marycrest College...I don't get back too often. I miss the spring season and fall as well.Those were my favorite times of year there. I live in CA now...
Thanks everyone for your support. I truly appreciate it. It is a relief to feel that I don't have an obligation or duty to try to inform them or invite them into our lives. We've given that invitation long ago. It is up to them to take action if they want to know their dad again before it is too late. Thank you.
ms. magic, you'll see a lot more of them after your husband dies. If I had it to do over again, I'd go to an elder attorney at first diagnosis in order to protect myself after his death. It's 20 months now, and they're still trying to make my life miserable with their financial demands.