I haven't taken the boys to see their dad in quite a while. I was taking the 5 year old fairily regularly since it didn't seem to impact him as much. He doesn't really remember his Dad the way he was before the disease. He likes to go to the NH and visit the cats and play games in the game room. I don't force the older boys (10 and 13) to go. It's painful for them. The oldest is mad at his Dad for the way he behaved in the years before he went into the NH. The 10 year old was closest to his Dad, but can't really see his Dad inside of DH anymore.
DH doesn't show any sign he knows us anymore. He can't communicate in a coherent way. He's in a wheelchair, completely dependent. I only go a couple of times a month now, if that. And yet, I feel a need to bring the boys to see their Dad on Father's Day, even though I can't see who it benefits. Maybe DH knows they're there even though he can't show it. There's no way to know.
My question is, am I being selfish for making them go? I suppose it makes me feel some comfort to "show" them that they still have a Dad. But this year, it seems pretty pointless.
I'm just wondering what others think about this, given DH's condition and the ages of the boys.
since we cant know if he does see them visiting or really know within who they are, thats the question. it would be my own opinion --yes hes still the dad they loved and children that he loved, and it would be out of respect for them to visit and take him a small token on the special day for fathers. the stay doesnt have to be long. it shows character to be there for our loved ones in times of weakness and illness. it shouldnt just be during the good times. and i would like to think children see doing the right thing is something to be proud of. i dont think they should have to visit alot during the year but on special occasions why not allow them contact. like we say many times they may not know who we are but we know who they are. just my input. its always iffy with smaller ones who cant understand the whole picture. divvi
You need to do what is right for you and your family, but since you asked... some thoughts. We were taught as nurses and doctors that the last thing to leave a human body is the sense of hearing. I would have the staff have him look as comfortable as possible, maybe resting peacefully in bed or a recliner. I would encourage the children to make a card for Daddy that they could read to him, reminding them while he may not appear to hear them that way deep down he knows their voices and who they are. One the visit is out of respect as Divvi says but also to help the children throught the process of letting Daddy go, with no regrets, no words unsaid. While you may not know it you have the opportunity to impart some neat lessons about life and death. They need to forgive him for words and deeds which were involuntary due to this horrible disease. And they need to ask his forgiveness for the same. All this will go a long way in making the actual death a lot less painful for them. You by your actions will set the tone and will serve as the great role model that you have been all these years.
Oh Kelly-I have thought about you so often. I would encourage the boys to visit-but not force the issue. If one of the boys totally refuses let him wait in the game room. As divvi and scs said-it will help teach your sons that every life has value.
Thanks so much for your supportive words. I was tending towards wanting to take them, but I won't force my oldest, as you said, bluedaze. Just going there means something.
I do like to think that he is in there and can hear us. Maybe it's on a delayed basis, I think sometimes.
You are all so wise and caring..I know I've come to the right place when I post here.
Hugs back! Just thinking...I know that's dangerous...would your eldest put into words what he feels. I am concerned about his feelings especially given the end is in sight. Does the facility have a social worker or hospice worker who can help him work throught this? Not knowing your situation at all, probably therefore I should shut up, but I won't, your DH could have been very jealous of your first born and said mean things. Your husband will die and he will finally be at peace but your son will need some closure. Your son needs to know that his Daddy loves him very much. Just a thought.
My two cents is that someday the boys will 'wake up' and wonder "What ever happend to my father?" The disease process is so tough for us to understand it is more difficult for them and they will need a way to explain it to both others and themselves why their father is gone.
I read a marvelous book written by a woman who's mother died in the 1950s from Polio. She was 5-6 years old and had just the vagueous of memories of her mother. She grew up not understanding why other children had a mother, and she did not. As an adult she undertook a research project to learn what polio is how it took her mother and retraced her mother's steps from Dx to death, even meeting some of the nurses who cared for mom. The author needed all this to put the experience in perspective.
I would see value in putting some memories of dad and his illness into your son's heads now that they can fall back on someday, even if it is not of value to them right now.
I agree with m-mman. Have you thought of AFA Teens (lists on Joan's homepage). Your oldest is at a tough age and maybe talking to kids his age would help...or doing an assignment on ALZ. (((((hugs))))) to you. You are in a tough place.
I have lost many people in my life starting from childhood. When I was about 10 my grandmother (who was in her 80s) married a man that did not like children and was mean to us. 3 years later he left her when he found out he was going blind. My grandmother developed senile dementia and did not know me. My love before she married this man was able to love her even though she did not know me. She was still able to talk, do her quilting, garden, but did not know us cause her short term memory was gone. I would go talk to her, listen to her stories of her childhood, be there - even though she didn't know me. I would not trade those times with her for anything. My brother refused to go - he did not like the way she was. I had a similar situation with my mom except she did not communicate at all - just sat there except when I would tell her 'I love you mom' she would say 'I love you'. (never heard that growing up). My dad had a stroke and was mostly a vegetable. My kids (were about 7, 8) would visit him, see his condition (seizures, drooling, etc.) but learned to accept that as part of life. Growing up on a farm living and dying were part of life.
I know your husband doesn't communicate but if your kids refuse or you do not let them go, they may end up with 'if onlys'. I would encourage them to write their feelings or a story to read to him. I think too many people keep kids away from sick people not wanting to scare them but living and dying are part of life that will always touch their lives. If it is treated as a normal part of life they will not have nightmares or bad dreams. It is good that the 5 year old goes - he probably does see his dad's condition as part of life. The older ones have been allowed to see it as not normal. Have them go but give the option to leave the room after wishing them a happy father's day. A few minutes of reality will not hurt them.
As for your son's hurt by his father - he needs to understand that by holding onto anger is only hurting him. Our anger towards someone and unforgiveness only hurts the person that carries it around - not the person they are angry towards. Something to think about: help your son to write a letter to his dad expressing his feelings - not an angry nasty letter, but one that he can express his feelings. I would think after getting it all out he may end the letter with telling his dad how much he loves him. If not, that is alright and your son needs to understand that. Then he needs to forgive his dad and himself. I believe just because a person is sick does not mean you can not tell them how they hurt you or how you feel. You son could even say something like: dad they say you treated me badly because of this disease. I don't understand it right now but someday I hope I can. But, it needs to be done respectfully and that is where you can help your son.
I hated my dad because he hated me. He was a dry alcoholic and was very nasty to me - physically and mentally. At his funeral I surprised myself by crying. Why did I cry? Years later I figured it out: I could have been a great daughter if he just would have let me - given me a chance. I wonder if somewhere inside your son feels something similar. Also, he needs to start accepting that his dad would have been a better dad if not for the disease. He needs to now because until he forgives his dad and himself he will not have good relationships in his life.
Kelly, I know this is a hard one. I can only tell you what we are doing. We still have a 15 year old daughter at home. We also have 4 kids in their 30's. My 15 year old is the wisest one. She sees her dad day to day and cares so much for him. She knows how mean he was to me over the past 10 years and how I was ready to leave him when she turned 18. But now that he is sick she also sees me forgiving him, it was his illness that made him a mean person. Don't get me wrong, DH was always a hard man to live with. But he had a sweet side too. DD and I talk often about the illness and what it has done to his thinking. His oldest daughter will not have anything to do with him, and I can not blame her. But once again it was the illness that made him be that way. The others have drifted away. All you can do is let your kids know that this is there dad. You married for better or worse and this is the worse. You know he can't help the way he is and that they should not be mad at him, but mad at the Alzheimer.
This is so hard on everyone. I wish you the best. Take the kids to see their dad and a least say hi. Then if they feel the need to leave the room. Let them leave. That way you have done all you can do and the rest is up to them.
I'm so sorry you are having go through this with your kids. Just let them know you love them. And I am praying for you all.
I became a geriatrician because my parents brought me to nursing homes regularly every since I was a toddler and had me spend hours with my grandparents even when they could not speak. I remember being scared of NH when I was young but I got used to it and then learned to really enjoy NH. On the other hand, I was not visiting my own parents there.
Thanks so much for helping me make this difficult decision. I agree that the boys should see their dad, even for a brief time. The last thing I want is for them to have regrets later on. They're too young to really think about how they'll feel down the line, so I have to do that for them. I know what you mean, Charlotte. Our oldest does need to work through and let go of his anger towards his dad. I keep emphasizing to him that it was the disease that made him act the way he did, that it was out of his control. He thinks his dad hates him. (It doesn't help that on one or two occasions when he was visiting, his dad yelled out, like he was remembering being mad at him.) I keep trying to impress on him that his dad loves him though. It just seems to fall on deaf ears, but I'm hoping that eventually it'll sink in, maybe when he's older.
I like the idea of having him write down his feelings. He likes to write. I think it would be therapeutic.
Your words "I could have been a great daughter if he just would have let me - given me a chance" nearly brought me to tears. I never thought of it that way, that he may regret his own actions towards his dad. (Our 10 year old has expressed this to his therapist, it's heartbreaking for kids so young to carry such a burden. I reassure him that he was a good son and was so young, he didn't know how to respond to his dad's behavior.) Writing down his feelings might help him get at feelings he doesn't even realize he has, and help me help him work through it.
Thanks for the AFA suggestion, Phil. Our 10 year old visited the site a few times but lost interest. Now that he's older, maybe I can get him to revisit. I think it would be good for our oldest to talk to other teens about his feelings.
I'll take them on Sunday. It's the best thing in the long term, even if I can't get them to see that now.
Kelly - after my dad had his stroke, before he got bad, he would keep asking for me. My step-mom called to tell me. It shocked me but I finally decided to go see if maybe he was ready to tell me he was sorry and that he loved me. We drove the 650 miles to see him and all he could say were mean things but mostly 'boy - you need a haircut'. He had no idea who I was and I have no idea why he was asking for me by name. My step-mom could not believe what he said because he had changed to a nice man when they met.
I am sorry for your sons - I do hope someday soon they will come to terms with the pain and heal.
Kelly--I have wanted to comment on this thread since I first saw it. My husband's Dad became ill with EOAD when Steve was about 10 or 11. This was in the 1950's and a lot less was known about it and the effects it could have on the whole family. His Dad's illness was very traumatic for Steve, mainly because the Dad became violent and had to be placed, involuntarily, in a state mental institution. Things went downhill from there and his Dad died as a result an encounter with another patient. My husband never had therapy, there were no camps or other services available for kids whose parents had EOAD. But thankfully, with an amazing Mom and great support from the extended family, my husband survived emotionally and became an extraordinary person--the sanest and happiest guy you could ever meet!
So I would say--yes, take your sons to see their Dad. They do need to learn that illness is a part of life. Even before I read Josh's post about his inspiration for becoming a geriatrician, I thought that perhaps it might influence your kids in a career path, and should certainly help them to develop compassion for others. And please, do take advantage of the support services, therapy, etc. that is out there for children today.
Kelly, I am so sorry for the loss your sons have at this young age. I am also of the opinion that you should take them to see him. I also am at a loss as to why you only go once or twice a month, if that? is there a reason beyond your control for that. Who sees that his needs are met?
I placed my husband on April 27th, and I can tell you one thing for sure, you have to be there more often than what you are going if they get the care they need and even then they sometimes do not. I just left the home about an hour ago and if I had not been there he would be half cared for. That is the way it is. I had the Social Worker from Hospice here at home long before I placed him tell me that if he ever had to be placed, you have to be there, no matter how upscale the home is, in order for them to get the care they need,, you have to be there.
I hope I have shed some light on the reason you need to go more often, IF you can.
Kelly you do have your hands full, 3 young boys and a dear husband with this dreadful disease, seems more than one person should have to go through. I still however hold my stand on this. The person with Alzheimer needs the family as much as an infant baby, helpless they are. I am not directing this at Kelly whatsoever, I am just trying to paint a picture here of the need the Alzheimer patient also has. They are sick beyond words, a person with cancer is thought of as a sick and dying person but somewhere along the line the dear Alzheimer patient because they no longer know us, no longer are living in our world, they are just falling through the cracks. They need us also just like small children need us.
The nursing home where my husband lived for his last month was good, ESP the CNAs who were always checking on them. I did go almost every day but there was little to do. He didn't know I was there. They did which I am sure was important, but the home was near me and I have no other commitments. I know from the past you are not in that situation. Aren't you the one a couple of years ago whose husband AND son were in diapers at the same time? And whose husband was really difficult before he was placed? That does make a difference. mine got sweeter with dementia.
kelly - yes we are wondering what decision you made. And remember - no matter which way you went, you will not be judged here. You are the one that has to make the decisions as to what is best for your family, not us. Either way - I know it was not an easy decision.