View Full Version : Struggling with my dad, who has Alzheimer's
simplelife2
1-12-11, 10:21pm
His Alzheimer's has gotten so much worse this past year. Some days, he just makes some sounds. I know he thinks he's talking but it's gibberish. He's had some small strokes, which doesn't help since the one side of his face is pretty droopy. I go over to his house several times a week to talk, do some physical therapy and bring him treats. He's been really out of it lately, so many times I leave practically in tears. He's just this bent over shriveled up old man that bears no resemblance to my dad -- or at least the one I remember.
Anyway, I was really encouraged today when I arrived because there was this look in his eyes. The vacant stare was gone. He was there. He was connecting. We did his exercises and then I got him some chocolate. He's still not using the arm on the side where he broke his shoulder in the fall. I'm trying to get him to use that hand by using it to eat candy. I call it is chocolate therapy and tell him I'm jealous.
We were having a nice visit and then he says, "I don't think I'm going to be here for much longer." I knew exactly what he meant, but I acted as if I didn't. "Here in your house? This chair?" "No. Alive," he tells me. It's not the first time we've had this discussion, but we haven't had it in awhile. It was as if today he woke up and suddenly realized what his life has become, trapped in his house, in his chair, in his body.
"Just hang on," I tell him. "It will get better. Brandon's going to be graduating soon. Don't you want to see him graduate from college." He's not convinced. "I think 87 years is enough. I'm done." By then, I'm pleading with him. "The snow will melt soon. We can start going out for walks and see all of the flowering trees. You'll like that. We can sit outside and listen to the birds sing and feel the sun on our faces." He relents. "Okay. I'll try."
A victory. But I am not comforted. In my heart, I know he's right. I'm just not ready to let go.
iris lily
1-12-11, 10:33pm
my honest reaction is that I'm sorry you can't connect with your father at the level he needs you to connect. you want to pretend, he is done with that.
I know, we aren't perfect! but the jollying of the old folks is something I would deeply resent if I were one of them.
edited to add: sorry, my first answer was harsh but has a lot of truth in it. As does your own sorrow that he isn't the dad that you knew AND he is ready to leave this life. It's sad all around. Be kind to yourself and also try to meet your father where he is, when it's one of those days that is a gift of lucidity. I think you will look back and feel better about yourself if you connect with him on an honest plane, as difficult as that is and it IS DIFFICULT, h*ll ya.
early morning
1-12-11, 10:36pm
(((simplelife2))) It's a terrible thing to deal with. I'm glad your dad had a good day, when he could share his feelings with you, and give you the gift of knowing that he's at peace with being at the end of his days here on earth. I'm sorry for your pain and wish I had words to make it easier.
Oh my dear... what a difficult time. Are you getting any support from others who have a dementia parent they are caring for?
Blessings.
my honest reaction is that I'm sorry you can't connect with your father at the level he needs you to connect. you want to pretend, he is done with that.
I know, we aren't perfect! but the jollying of the old folks is something I would deeply resent if I were one of them.
Iris, I think that, rather than "jollying of the old folks", simplelife is just expressing grief and anticipatory loss. A little kindness would go a long way here.
I agree with early mornings comment. I also feel your father has fond peace and is ready to die. I visited my dad the day before he died in the nursing home. He had had a stroke. He had been very independent person all of his life he was 84 years old. Here he was in a wheel chair being pushed around. I could see in his eyes that he was willing himself to die and he did the next day.
simplelife2
1-12-11, 11:24pm
I know, we aren't perfect! but the jollying of the old folks is something I would deeply resent if I were one of them.
Good thing you're not my dad then. He enjoys and looks forward to my company.
Fact is, neither one of us is in control of when he dies. What I say or don't say is not going to change that. Would it be better if I told him that nothing would get better and that there was nothing to look forward to? That he might as well just die? If he died tonight, I would want him to be thinking of those sunny days walking together, for that to be what he holds in his mind, not how alone and scared he might be.
If you read between the lines, we are saying goodbye, slowly. Neither one of us has any illusions. And I will find comfort in knowing that he is ready.
iris lily
1-12-11, 11:32pm
Good thing you're not my dad then. He enjoys and looks forward to my company.
Fact is, neither one of us is in control of when he dies. What I say or don't say is not going to change that. Would it be better if I told him that nothing would get better and that there was nothing to look forward to? That he might as well just die? If he died tonight, I would want him to be thinking of those sunny days walking together, for that to be what he holds in his mind, not how alone and scared he might be.
If you read between the lines, we are saying goodbye, slowly. Neither one of us has any illusions. And I will find comfort in knowing that he is ready.
I'm sorry, spoke out of turn.
Telling him "that he might as well just die" is not exactly how I'd put it, but validating his feelings and his view of what's happening to him--in other words, recognizing his reality--might be comforting to him in the end. That's what I meant.
But you know him better than I do, that's for sure.
The death of a parent is never easy. When my mom died suddenly at 77, I co-incidentally had just visited her the previous day. I was always glad we had had that last good visit when she was cheerful.
Your father may have made peace with dying which is probably good for both his peace of mind and yours, but that does not mean he will die soon. No way to really know.
Comfort to you, your family, and your father in this difficult time.
Iris, I think that, rather than "jollying of the old folks", simplelife is just expressing grief and anticipatory loss. A little kindness would go a long way here.redfox, thanks for writing a more tactful response than I would have.
Simplemind
1-13-11, 12:14am
I'm sorry. My mother is also slipping away with Alzheimers. It is so hard to lose each connection piece by piece. Poor health is a challenge on its own and the Alzheimers adds a whole other layer. I so understand the tears as you drive away. You are giving him the greatest gift. Cherish those moments of connection and make the most of them in the way that is meaningful between the two of you. God Bless........
It's not unusual for people to know when they are about to die. Some have predicted the very day. Others experience departed loved ones coming for them. It's important to acknowledge and respect what he's saying to you. He has to be frustrated that he's trying to convey something personal and profound that you don't want to hear. Not that I blame you. But if you pay close attention, you may catch a glimpse of the divine.
At some point, I hope you can tell your father that you understand when he needs to go. Bless him, as it were, so he doesn't feel guilty about leaving you. This is a really really hard thing to do as acknowledging the end is near makes it so much more real. But in the long run, I think it's for the best for both of you.
Take care of yourself as walking a parent to heaven's gate takes a lot out of a person.
Take care of yourself as walking a parent to heaven's gate takes a lot out of a person.
That's beautiful.
When my elderly father was dying, I sat by his bed and had a tape of his favorite opera music playing quietly near him. I talked softly to him about relaxing and letting go, I told him I loved him, thanked him, and told him that we all would be fine... He died later that night.
we recently lost one of our close friends from church. He was 84 yrs old and ate lunch with us each Sunday. After he lost his wife about 6 yrs ago, he had a hard time adjusting, but he did. Got into a routine of visiting a local cafe and hangout for breakfast and lunch. It was very good for him to sit and talk with the same group of friends each day. He discovered he had cancer and did not want to do any treatments. Said over and over "I've had a good long life with many friends", "pray for me, but do not pray for me to get better, I am ready to go." It was disturbing, but I can see how I would feel the same way. He lasted a few months and always made the same request. When he could no longer keep up his routine which he enjoyed, he was ready to move on. Good luck to you.
"I don't think I'm going to be here for much longer."
Does he mean he thinks he's going to die or that the horrible disease is taking "him" away. Maybe he noticed how he slips into and out of his awareness and how the disease is taking a stronger and stronger hold. He may live many years, but lost in the disease.
It is horrible. My mom, had a long battle with Parkinsons, the type with severe dementia. It was so hard on me and my brother because we really lost her when the Pakinson's took her mind.
In Dec 2008 during our Xmas phone call, my Dad (almost 80) told me that he had done everything he wanted to do, and was now just here to keep Mum company. His health had been going downhill quickly over the previous 6 months, and continued to do so: he died a month later. We found that he had been making numerous preparations: packing things up, labeling them, giving things away.
If it feels right to you, you could let him know simply that's it's OK to go when it's time.
Kevin
His Alzheimer's has gotten so much worse this past year. Some days, he just makes some sounds. I know he thinks he's talking but it's gibberish. He's had some small strokes, which doesn't help since the one side of his face is pretty droopy. I go over to his house several times a week to talk, do some physical therapy and bring him treats. He's been really out of it lately, so many times I leave practically in tears. He's just this bent over shriveled up old man that bears no resemblance to my dad -- or at least the one I remember.
Anyway, I was really encouraged today when I arrived because there was this look in his eyes. The vacant stare was gone. He was there. He was connecting. We did his exercises and then I got him some chocolate. He's still not using the arm on the side where he broke his shoulder in the fall. I'm trying to get him to use that hand by using it to eat candy. I call it is chocolate therapy and tell him I'm jealous.
We were having a nice visit and then he says, "I don't think I'm going to be here for much longer." I knew exactly what he meant, but I acted as if I didn't. "Here in your house? This chair?" "No. Alive," he tells me. It's not the first time we've had this discussion, but we haven't had it in awhile. It was as if today he woke up and suddenly realized what his life has become, trapped in his house, in his chair, in his body.
"Just hang on," I tell him. "It will get better. Brandon's going to be graduating soon. Don't you want to see him graduate from college." He's not convinced. "I think 87 years is enough. I'm done." By then, I'm pleading with him. "The snow will melt soon. We can start going out for walks and see all of the flowering trees. You'll like that. We can sit outside and listen to the birds sing and feel the sun on our faces." He relents. "Okay. I'll try."
A victory. But I am not comforted. In my heart, I know he's right. I'm just not ready to let go.
My Dad died of a stroke after being diagnosed with Alzheimer's. I considered it a blessing for both him and my Mom, although I certainly wasn't ready for him to leave. I still miss him and wish I had been closer during his ordeal. I actually think he might have "hurried" his demise on purpose with his blood pressure medicine. He would have good days and bad days but on the good days he knew something was wrong and seemed confused on what to do.
I think you are dealing with your situation exactly right - you sound like a wonderful daughter. If your Mom is still alive, how is she dealing with it?
Peace and Love
simplelife2
1-13-11, 8:06pm
I think you are dealing with your situation exactly right - you sound like a wonderful daughter. If your Mom is still alive, how is she dealing with it?
Peace and Love
Thanks for all of the feedback from everyone. When I wrote the OP, I had just left his house so I was feeling pretty raw.
He has a pacemaker and nothing is terminally wrong. His biggest problem has been falls, but he's really starting to get the message about unassisted movement. I guess he could have a really bad fall or a more serious stroke. My sister has POA and he has a DNR, so if anything that would require major intervention, we are all on the same page about letting him go.
My mom died 11 years ago. He still lives at home with two of my brothers, who are his primary caregivers. I live close by so I spend time with him as much as possible. All of the family tries to pitch in, so that's been really good. One of my brothers is in charge of doctors and medicines, so he is given his pills and can't make any "mistakes." He's a strict Catholic, so I know he wouldn't hasten anything. I think this is just going to be a very long goodbye.
Upon reflection, I understand what people are saying about "releasing" him and I will try to be braver the next time in a loving way. But, as I said, nothing is imminent. Yesterday, he had some clarity and that's why he brought it up. It's not the first time he's talked about it. He had always been so active -- a steelworker, landscaper, gardener, golfer, handyman, etc. -- that it just is so hard for him to be so limited and confined. Earlier on, we tried some community-based senior programs and an Alzheimer's daycare program, but he hated all of it. Now, he requires too much individual attention for that to work.
We live in the Chicago area and this winter has been particularly bad, so I think it is intensifying things for him. When it's nicer, I'm able to take him for walks and attend things like community concerts. He's not one that socialized a lot or enjoyed going out to eat or movies, but he'll let me take him places after putting up a little fuss, but only if I stay with him. That's why I was focusing a lot on looking ahead and getting outside.
But, like I said I really see what others are saying about me telling him it's okay to let go, hard as that is. Thanks for listening.
loosechickens
1-13-11, 10:26pm
I don't have any good advice, simplelife2, just some warm thoughts coming your way for strength and courage to get you and your family through this terrible time. Neither of my parents had Alzheimer's, but I did see my father through a slow death from lung cancer and was with him 24/7 during his last days and there holding his hand when he died at home, so do have some understanding of your grief and feeling of helplessness.
It was a shock when my mother died, suddenly, in apparent good health, at 91, after bringing in her newspaper and getting ready to sit down with a glass of milk to read it.......but in retrospect, think it was certainly easier on her and on us as well.
I know from seeing what friends in real life have gone through with a parent or spouse with Alzheimer's, that there is a special misery as your loved one disappears, while the shell that person used to be is still there.
Cyberhugs......lots of them, coming your way.........
I don't know if it would be helpful in your situation, but I just listened to an interview on my local NPR station by the author of this book and an Alzheimer's patient:
http://www.amazon.com/Jans-Story-Love-goodbye-Alzheimers/dp/1933016442/ref=sr_1_8?ie=UTF8&qid=1294979624&sr=8-8
The book author spoke quote eloquently about the toll that the disease takes on caregivers. Reviews of the book seem very positive. Might be worth checking out, if only to have some insight from another person whose life has been affected by this awful disease.
I agree that sometimes elderly people know when it is time. My grandmother was ready to go many years before she finally did -- she was a devout Christian and was more than ready to meet her maker and be reunited with my grandfather, my dad, and other family she believed were waiting on the other side. She was mentally very alert right up to the end. Her body just gave out on her. A few weeks before her death the family decided it would be best if she went to a family group home situation, as she was becoming unable to keep up with daily living tasks and my mom (who lived next door) was not in a position to be a full-time caregiver. She was always very independent, and although she agreed with the decision I think the loss of her independence did affect her mental and physical health. I wasn't close by at the time, but I understand she went downhill pretty quickly after that.
lhamo
(((simplelife2)))
I hope you find some comfort and peace.
thinking of you today; i love my dad dearly and it would be very hard for me; will be as he will be 82 this year
Kris
simplelife2
1-21-11, 2:40pm
Well, my dad's words proved prophetic in a sense. He took another bad tumble trying to sneak out of bed after having an accident. My brother's didn't hear him until he landed with a thud on the wood floor and opened up his forehead so badly that they had to call the ambulance. He's been in the hospital since Sunday.
They did a "swallow test," which he has failed twice so they won't give him solid food. He's coherent enough to have had those difficult discussions about life and death. He has a living will that he did in 2004, but I reviewed everything with him to make sure his answers are the same since the time is coming. He re-iterated no invasive measures.
This left us with the problem that he has refused a feeding tube to his stomach, which the doctors recommended and we don't want either since its efficacy in the elderly is debatable, and the hospitals refusal to feed him since he can't pass the swallow test. He was eating without any serious issues prior to his admission. They won't even allow liquids or purees. One doctor recommended hospice, but my dad's Alzheimer's is late mid, not end stage. Another doctor wouldn't recommend rehab, which includes speech therapy to improve his swallowing ability, because he said it was pointless if we wouldn't allow the feeding tube. The standoff lasted several days. We finally got them to OK IV nutrition and letting him go to rehab.
I was honest with my dad and said it might not work, but he wanted to at least try. Thankfully, he has Medicare and great secondary coverage, but even so, it is such a fight to get the right care. All of the nurses and assistants have been wonderful, but the doctors seem to have written him off without even trying. We'll see how he does -- I'm not that optimistic -- but my dad wants to give it a shot without going to extreme measures.
The support here really helped me have that honest conversation with my dad. And, as was mentioned, he was more than ready to hear the truth and be honest about things. We still hold out hope, but it is tempered by the reality of the situation. It's amazing how much strangers can help you when they approach the situation from outside of the whirlwind. Thanks again.
simplelife2-I get where you are coming from.
irislily-I get where you are coming from too.
Please, take as a gift any day that you can connect, on whatever level that may be. In the habit of your family's style of communicating...
irislily--you and your family's style of communication would fit well in my own. You can hang w/ me when I am dying...I know other's need a different salve.
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