I haven't posted for awhile. Hubby still in very early stages, he is 63. I am just so ticked off at my 40 year old son and family. He lives an hour and half away from where we live. We live in Toronto. When we finally got a diagnosis in December of last year, he was going on and on about how we should move to be nearer to him, etc., etc... He actually got quite nasty when i said my support group was here and I have lived here for over close to 50 years and I was staying put. He had said he would like his father close by so he could drop in to see him after work everyday and spend some quality time with him and maybe be a support to me. Well... you guessed it.( we didn't move by the way) The only time they come to see us is if they drop off my only little grandson who is 10 months old for me to babysit over night, they never visit just for the sake of seeing us, only if they need me to overnight babysit and then it is to just drop him off We drive to see them but it is getting a little harder as my hubby does feel a little out of sorts when he is in unfamiliar surroundings. We have driven to see him 3 times in the last 2 months.Other than that, not seen them. This was my son's first Father's day as a dad to his little boy. I texted him to wish him Happy Father's day. He said " Thanks, mom, wish dad happy father's day for me too". That's it!!!! No card, no phonecall nothing. I had asked him the week before if he would like to come for a barbecue, too busy, how about this Thursday ( today), too busy... Next week as he is on holiday, he'll have to check with his wife, which I know means no. What the heck happened to seeing his father every day if we moved up there. He can't even take 5 mins to call him!!!! I can tell you i have shed a few tears. We are amazing parents! Always been there for him. My husband was a wonderful dad to him, Playing baseball in the park, coaching his lacrosse team, hockey, you name it, we did it. My poor hubby says, " it's okay Julie, I know he loves me". Really? No one knows how quickly Alzheimer's progresses, each case is different. Paul seems to be progressing slowly but who knows. This time next year he might not know who we are!!! I am so very, very sad for him. At least our 22 year old who still lives at home, has time for him. I'm sorry but saying one is too busy for their father with Alzheimer's doesn't cut it with me. Everyone has at least 5 mins in their day to be kind. You know, when i hear of older people, being just left in nursing homes and never having visits from their kids, I never felt it would happen to us, but I do now!!!! Anyone else dealing with a similar plight?
Julie, we have no children, so I can tell you we are not dealing with a similar situation. Others who are will come along and share their experiences and wisdom with you.
I can tell you what you're experiencing is not uncommon and thankfully you didn't move. there are many stories on this website when parents have moved closer to adult children and have never seen them or have become babysitters while they live their very busy lives.
Soory you have to be dealing with this and your husband's dementia too.
julie55, I know this hurts you to the core and I really sympathize with you. Could he be pouting because you wouldn't move near him? (Good decision on your part to stay where you feel comfortable). Since my DH is in a NH and recognizes no one I honestly don't care whether they visit or not. Since my DD and DS live nearby they usually do visit for an hour or so on weekends. I have asked them not to take the grandgirls to visit because there are so many things that happen (male residents peeing in the corner of living room area) that I don't feel they need to be witness to. My DH has had the monster disease since age 59 or 60and is now almost 70. I often wonder if my mid 40 year old adult kids wonder if they only have 15 years or so before they are in the same condition their dad in. That must be extremely depressing for them. It also makes me sad that both have an above average chance of getting it. Maybe you could talk to your son and tell him how it makes you feel that he doesn't visit with his dad while he still recognizes him. He may have an explanation. I know this is hurtful for you and I do hope you can find peace. I care Julie.
Our son's comment is "he doesn't remember I called so why bother." That is why I was shocked he showed up on Fathers day with our grandson. Our daughter has not called him in - can't remember the last time she called him.
Hi Julie--Yes, I was one who moved myself and DH closer to adult daughter, s-i-l and three little grands so they could "help" us. It is a mixed bag. I love our new, little, one-story house facing a beautiful park with walking trails, and the cost of living here is very cheap compared to NY where we came from. The bigger NY house was pleasant, but was getting to be a lot to deal with. Friends and family had pretty much faded away up there, too. The usual Alzheimers story. However here in our new home, it is a constant struggle not to be the family's indentured servant on top of taking care of end-stage, Hospice-admitted DH. The family helps to some extent at times, but I do far more for them then they do for me, and there is no real understanding of my exhaustion and isolation. The Hospice social worker is helpful with these issues. To summarize a couple lengthy conversations, she says I really need to "just say no." DD can get very nasty though, when I try to set limits...and that hurts. For instance, she doesn't see any reason why I can't take the grands when they are sick, since I'm "just sitting here with DH anyway." I've given up on that one--I do let them stay here when they're sick, so DD and s-i-l can go to work. It isn't great for me, but of course works well for everybody else. I think when DH dies (assuming he goes first--it wouldn't surprise me if I die first), I will consider whether I want to keep this house as kind of a home base while traveling extensively, or whether I just want to sell it and move back to NY. I would rent rather than buying, to avoid high housing prices and to leave myself a little more free from obligations…in case I wanted to move again, or live for a year or two somewhere else…it's all a little vague, but I don't want to be in a position where I have to always be doing things for family members. I have other relatives here in the Heartland, too, and so far it has just been a constant stream of family who need my help with something or other…when I am drowning myself. I am really sick of it, and would rather keep family and "friends" at arm's length in the future. I didn't used to be like this, but Alzheimers care-giving has changed me a lot.
Elizabeth, ALZ care-giving does change us - a lot. So sorry you are being taken advantage of by family members. This is so sad and so hurtful to you. Since DH died, I am enjoying my 'solitude' for the first time in over 10 years. Trying to sell my house to move to another state - that's not going quickly enough for me, since I've already sold most of my furniture and rattling around in an 8 room two story house with no furniture is not much fun. At least I don't have much to dust! I will be renting - don't want all that goes with home ownership any longer.
You will decide when the time come what you want to do. Don't rush it. Peace to you.
Bended marriage.....out of 4 "adult" children NOT one single one called to wish my husband a "Happy Father's Day". He was aware of the day and very depressed not to hear from them.
Shame on all the kids who forget to call to wish a "Happy Birthday" "Happy Mother's Day" "Merry Christmas" etc. They don't get a free pass....they don't have Alzheimer's Disease.
AliM I don't believe my son is pouting. He might be pouting about the fact that he asked me to babysit last weekend from Friday at 5 am. to Sunday at 7 pm. and I said no because I was having visitors from the UK staying with me. After he texted me to ask, I texted back and said I was very sorry but I couldn't as I had visitors, plus I was working in the teashop on the Sunday. I didn't get a response. I don't know if it is the self entitled generation that is the problem. He lives in the town where his wife's family live and it is as if we are just an afterthought. When I have tried to say things in the past about his lack of keeping in touch, he is full of excuses. I certainly don't expect him to put us first as he does have a family of his own, but i do expect that on special occasions we are recognized for the good parents we are. I honestly cannot for the life of me ever imagine treating my parents this way. They are gone now, but I was very attentive to both of them during the last years when they were ill. I know there isn't an answer but I just needed to sound off. I find the advice on this website so helpful and my heart goes out to lulliebird's hubby, and to Elizabeth. I am going to speak to him next week about this, but he has a way of turning it around and acting as if i am expecting too much. I really do have a full life of my own so it is not like I depend on him for anything (God help me if I did). I am going away for a week with a girlfriend tomorrow and my younger 22 year old son will watch out for Paul. He can still be left alone but would eat icecream for supper everynight if left to his own devices. My youngest will make sure he eats properly. He was our little surprise as there is 17 years between our 2 kids and has turned out to be a blessing. I just don't know what people are thinking when they cannot even take 5 mins out of their lives to wish their parents, especially one who is ill with Alzheimer's a Happy Father's Day, Mother's Day etc.. It boggles the mind.
Reading the posts on this discussion is heart breaking. I don’t have any children, but I feel really bad that the people on this site have to bear the sorrow and anger of seeing their own children behave so callously toward a sick parent. And how sad for the fathers, like lulliebird’s husband, who realize that their kids ignored them on a day on which they should have been honored. As julie55 says, it boggles the mind.
MY DH has 6 grown children, who are sorry sorry sorry. They do not call him for any holidays but hound him to no end about their birthdays and come around then with their hands out. SO when my DH is gone I am gone from them. I will never have any contact with them in any way.
So many of the comments on here speak to me.......my DH is 64 and in care here in Vancouver (currently in hospital for his agitation and aggression while they try and regulate his meds, but that's another story.) Unlike your husband, he has gone downhill so very quickly as it is just coming up to three years that we first saw symptoms and only two years since his diagnosis. His care facility (private) has said he cannot return there once he is stable, so I now have the worry of new placement on top of everything else. I am fortunate that our three adult children are supportive, or as much as they can be while getting on with their own lives, jobs, families, etc. If you think your son may be concerned about his chances of getting this down the road, I would just reiterate what the geneticist told me - that having a parent with dementia does not mean you have a 50% chance of getting it - yes, you have a higher risk than the general population, she said 15 - 30% but I liked that she said to regard it as them having a 70 - 85% chance of NOT getting it.......I hang my hat on that and hope it is true!
I am glad you did not make the move - it seems that decision was the right one. All the very best going forward.
I was thankful that both children called on Father's day. DH had no idea what day it was until he opened the card I left for him at breakfast. Then the minister at church made a big thing about it being Father's Day, so I was thankful that out DD called right after we got home. And then we waited, and waited, and DH said he hoped our DS would call. And I started to get upset that our DS had not called. Well, I did not know that our DS had gone to Toronto for the weekend, so it was evening by the time he called, and I could breathe a sigh of relief.
My father has not known who I am for quite some time (he is in late stages of Lewy Body Dementia). I suppose at first that it bothered me, but it doesn't anymore. I have not been able to visit him for the last couple of years, because we don't travel anymore, but I am going to see him next week when I am on my little mini vacation and my DH is in respite. I am doing this for me, not for my father. I have been feeling guilty about not visiting him, and this might be the last time I get a chance to visit (Dad is 97). If the weather is nice, I will take him out into the gardens at the facility he is in - I know he enjoys that very much, and it really doesn't matter who he thinks I am, I know it will put a smile on his face.
One thing I learned during my 8 years of being sole caregiver for my husband with multiple health issues in the bargain was how to say NO. For heaven's sake and your own....learn to set boundaries and stick to it. If family members are so out of touch and understanding when you are nearby and they still think you are a stinker when you say no, you are tired, hubby was up all night and you had little sleep from pee and poop patrol, or his wandering around the house etc. then they are all about themselves anyway.
I learned fairly well early on, being the one who had to do everything with no help, when the church group would ask for help for luncheons for funerals, or can you come take photos of the Christmas luncheon, or is it ok if we go on a hike a little later...I am still at the gym....the answer became no it is not alright. One doesn't have to be mean in tone when no is the needed answer. However setting boundaries is a necessity when caring for one with any of the dementia illnesses.
Good luck to one and all. This is the toughest road you will ever stroll...and tired...later you will learn just how tired you really are because you don't have time to really get the sense of that now, you run on adrenilin until you run out.