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Dad is 96, has dementia. Our father/daughter relationship has always been tense and so I have embarked on the most difficult, puzzling job I've ever experienced in being one of his two live-in, 24/7 caregivers since 2012 (my husband is Caregiver #2).


I have witnessed dad deteriorate by slow-slow-slow increments over the past 4 years and this is the worst he has been. He refuses to get out of bed no matter how he is coaxed. He will barely eat most days. We give him Pedialyte with 100% juice and water to drink, as that is all he will accept that will not further dehydrate him (he was a big coffee and Pepsi drinker).


Last month I came home from my part time job (I work 4:30am-noon 4 days a week & absolutely MUST, as my job covers health insurance coverage for my husband, daughter and myself) to find dad had ventured out of bed and fallen. There was dried blood clotted on his head and some blood in the area where he lay. Paramedics came, took him to the closest ER. Fifteen stitches in his head, 2 CT scans, 3 x-rays and 8 hours later he was released, sundowning and nearly impossible to manage.


Since then, his behavior has been as above: 22 hrs in bed, barely eating, barely drinking. It is an ordeal to get him out of the house for anything and fortunately we don't have the worry that he will wander. I discovered an agency, Visiting Physicians, that will make house calls and through the grace of God he qualifies for their care. I am waiting for their initial visit to our home as I write this.


I am burnt out, discouraged, filled with sadness and anger. And this is despite seeing a psychiatrist regularly, taking antidepressant meds, seeing a therapist biweekly for an hour session and belonging to a support group.


Is there anything, anything at all that one can do in this situation? I feel like I'm witnessing dad fade away by increments so painfully slow that my spirit is being taken away just as slowly.


Is there anyone who is in, or who has experienced this type of situation?

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You've done what you can for your father and you need to accept this because this is part of the letting go process - for you. You need to give yourself permission to be okay with how things are because most likely he won't improve too much, maybe a little bit here and there. My mother is 74 but has the body of a 94-year old. She's been bedridden for the last three years. She doesn't want to do anything - at all. At first I was stressing out because I kept thinking I want her to have the best quality of life until her end, and then it dawned on me one day that she does have the best quality of life under my care, hands down, just like my father (now deceased) as I also cared for him. So, I don't push it with her. If she wants to do something, then great; if not, then I just give myself permission to accept that this is fine. It's not easy to believe in your heart that it's okay to let go but when you compare this to the remaining time your father has and what quality of life he'll have until his end, you'll come around and be okay with telling him in you heart your Goodbyes. I love my mother so much but she has no quality of life and is just existing in a body in her bed. I, frankly, want her to pass soon because it's so hard for me to watch her in this condition. She's my last family member left. I'll be devastated when she's gone but at least I know she's no longer physically suffering. I'm not saying you should prepare for your father's death right now. I just think you need to be realistic about what kind of recovery he'll have and make the most of the time you have with him.
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kthln, my father went through something similar. He was not doing well his last two years of life and didn't ever want to eat much. He preferred finger foods and snacks to heavier food. A month or two before he died, he tripped over a towel that was on the floor and fell. He got worse fast after that fall. I did have some luck getting him to eat some things, like dry toast and scrambled eggs. He didn't want much, though. He would eat just a little. In his case his organs were no longer in good shape. We learned at the hospital that his stomach was inflamed, which helped explain why he didn't feel like eating or drinking very much.

Have you checked your father's urine? Sometimes things like a UTI can make them feel very week and disoriented. At his age he may have some kidney failure that would be causing problems. It is hard to know, but the visiting doctors can check.

Something I wondered, too, is if your father may have had a small stroke that caused the fall, or happened when he fell. My mother fell last fall and has been much worse since that time. This was even though the fall was not serious. I wondered if she had a TIA and then fell. After the fact, it was hard to know for sure.

I know a lot of what you're going through. It would be great if you could get your dad to eat something like a scrambled egg. I think getting a little something in their stomach helps it to feel better. My father would drink a little Ensure when he was in the hospital. It was about the only thing he would drink when he felt so bad. I know that life has to end eventually, but it's better when they feel more comfortable.
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Posting on Agingcare is like a box of chocolates? Sorry! My obsession with quoting movies got the better of me. No offense intended - a hoping for a smile.
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Right. I think that we all are trying to come up with helpful ideas, based on our experiences and outcomes that we gained through trial and error. We can't know everything about a particular patient or their entire background. I think that the suggestions are offered in a spirit of kindness and support. We take what we can use and discard the rest.
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Kthln, I just read your original post again. You ask is there anything at all that can be done in this situation and has anyone experienced this.

Most people on this forum have gone through or are currently going through similar situations. The point I was trying to make in my previous answer is that there is only so much you can do as a loved ones life is near the end. And it seems to me you are doing everything possible for you Dad.

Life ends. We have to accept that. It's not our fault that our elders die. You should have no guilt. You Dad is a very lucky man to have such good caregivers.

I do hospice volunteer work. Many of my patients are dying in Nursing homes with no friends or family. Go to your local nursing home and spend a few hours. It may give you a better appreciation of how well you are doing with your dad and how fortunate he is.
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Come to think about it - in the last two months of my dads life, before he pretty much stopped eating altogether- he was always requesting his care givers to make him milkshake.
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Have you tried home made milkshakes and smoothies? Smoothies can be made with fresh fruit and ice - obviously- but also can have vanilla yogurt, vanilla soy milk - and be made to be crazy delicious and good for you. Ten years ago my disabled son was hopitilized for six week - two emergency surgeries. My then 6' baby got down to 99 pounds! So every Saturday we had a "mommy and me" date of milkshakes and french fries. Once he started gaining a bit I switched to healthier smoothies. If it might work, there are recipe books for smoothies - for variety and healthier versions.
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It does sound as though he has reached the final stretch, but then I though the same when my mother took to her bed. She now spends at least 20 hours a day there, most of the time she sleeps. She tells me she doesn't want to eat at every meal and survives on little more that 1000 calories a day. This has been going on for over 3 years now...
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Windyridge, I realize dad is 96 and I shouldn't expect to make him active. I do not. I have gotten him a hospice evaluation and guess what? Dad suffers from no "chronic" condition, has a BP better than mine; and therefore does not qualify for hospice care. He is in a "gray" area; well enough to not need hospice care but at his age and the manner in which he lives now he may very well be in the last stages of life. Then again, he could live another year or two. Or whatever.

And pamstegma, I, too, hope you reach 96 and someone gives you your wine, your one Tanqueray & lime and your one beer. Dad is a recovering alcoholic who came to his senses at the age of 70 with a diagnosis of colon cancer (tumor removed completely, never had to have chemo, radiation, or any of his colon removed) and thoroughly frightened, gave up his booze. Please realize that everyone has situations that are unique. When dad suffered his fall he was severely dehydrated, which made him dizzy & disoriented and most likely contributed to his fall. Getting him to drink one 16 oz glass of some sort of beneficial liquid is a trial. I wouldn't wish my situation on you, or anyone else. A little understanding would be nice. But as you gave me an incredibly flip answer about a year ago, I don't think you are capable of such. Please refrain from replying to any of my posts. All your "cute" answers only anger me.
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It must be very difficult to lose a parent, but I think you are doing good things by getting therapy and asking for help. I would check out Hospice as suggested above. I would try to make your dad comfortable and provide him all the rest he wants. And I wouldn't fret about his diet either. He may no longer be able to use the nutrients. You can discuss that with his doctor. Is he receiving Palliative Care?

Most people don't have their parents live into the 90's. I know it still seems too early to lose him though.
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For some mysterious reason a fall, even one resulting in no serious injury or head trauma can accelerate dementia and thus speed up the dying process in someone elderly and/or with marginal health. In August my 88 yr old mother fell - she had been living in Independent Living with a part time caregiver. At the time mom had mild dementia but other than needing a walker to get around she was in pretty good health. By November mom was moved to a nursing home and in February mom was put under hospice care. Like your father - these days my mother spends the majority of her time asleep and has very little appetite. Yesterday hospice told me mom could pass at anytime and most likely no longer than two months. If you had told me a year ago that this is how it all would be playing out - barring a serious injury fall - I would never have believed it.
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I am only 64, but I hope when I'm 96 somebody still gives me my coffee, my Pepsi and a glass of dry red wine at bedtime (just one) because it has antioxidants and vasodilators. Instead of Pedialyte, give me tonic water, with a chunk of fresh lime. A good gin like Tanqueray has beneficial botanicals (just one). Beer is a good source of quick carbohydrates and hops clear the airways (just one) and will make me sweat nicely on a hot day. All things in moderation.
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He is 96. He is going to die pretty soon. You cannot cure him. Quit trying to make him active. It's ok to sleep all day when your 96.

I would recommend you get a hospice evaluation. Hospice can make him comfortable. His health may even improve for a bit.

You need to accept the reality of this situation. It's really hard to watch our elders go down hill but we can't stop it.
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