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Father has been given 1- 1 & 1/2 years to live. I wonder if anyone can recommend books to help a family learn to communicate with the dying father. This man has been handicapped with severe osteoporosis for many years from walker to wheelchair to hospital bed now. He is totally alert and bright but collapsing internally from osteoporosis and aware his time is limited. Many many medicines have been used over the years and many different surgeries performed but now his many excellent doctors can do no more than make him comfortable. My question really is how does one talk with the dying? You can’t talk about dying all the time, or maybe even the future. What helps? Talking about TV shows, politics, the past?

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Talk as you always would, but let him take the lead and be aware if something seems to upset him. Don't treat him like a dying man until he's really dying, but encourage him to say to people what's important to him before it's too late.

My dad's future went from years to a month in a single day with an inoperable cancer diagnosis, and he barely missed a beat, except he immediately got to work telling his friends how much he appreciated them. (Yes, he was a wonderful man.) He died saying his only regret was not being able to attend my son's wedding one day.

Your dad doesn't want to dwell on the inevitable, nor should you. The future could end tomorrow for any of us, so while your dad isn't going to "buy green bananas," so to speak, that doesn't mean you should tiptoe around subjects that might be about a time when he's gone. Remember, if he actually has 18 months to live, no one is going to live in fear of that every day. It's a shock to him (and you) right now, but eventually it'll just be part of his life and he'll probably put it in the back of his mind and as they say, life goes on.

The one thing I'd advise if you're comfortable with it, is to tell him that anything that's on his mind is OK to talk about. I told that to my dad, and when he was closer to dying, he asked me what happens as someone dies. I realized then he'd never been with anyone as they died, but I was with my grandfather when he died. I was able to tell my dad that my grandfather just wound down and went to sleep, and that brought my dad great comfort. He died the same way, too.
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Dear Kathleen,

I hope these suggestions will help:

https://theconversationproject.org/tcp-blog/10-must-reads-about-death-and-end-of-life-care/

I know if it was my dad, I would let him know you are open to talking about anything and nothing. But most of all looking back at my own experience, I would tell him, I love you, dad as much as I could.

The doctor told us 6 months on Wednesday and he passed on Friday. Looking back, I missed my chance to tell him so much.
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TV shows, politics, the past, whatever you like! And I wouldn't exclude the future - this might even be one way to encourage your father to express his feelings about the point that he won't be there to see it, and allow him to open up without your having to say "c'mon, spill the beans, what do you want to say about dying?"

You need to let him guide the conversation once it's begun, whatever it is; but maybe one thing you could do is write a list of questions you can imagine you might wish you'd asked him while there was time.

I was included in a conversation between two ladies with terminal illness once, and remember some of their tips.
#1 No "puppy dog" eyes.
#2 We don't do pity.
#3 We say "I'm 'FINE' - Feelings Inside Not Expressed."

Always remember that your father has the right to keep his thoughts to himself if he'd rather. But that needn't stop you asking!
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I agree. Just ask if there is anything he would like to talk about.
I did with my father and was surprised at the response. He immediately said yes, and discussed something he had refused to discuss for 30 years. It made such a difference. Your Dad may not be worried about anything he needs to discuss with you. Is there something you would like to discuss with him?
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You take the lead of the person who has the diagnosis. His reaction may be that he wants to set in plans for end of life, for palliative care, for Hospice. He will have wishes about how he wants to spend his time, wishes about medications, wishes about care, wishes about pain relief. He will have wills and POA work to work out if he wishes.
So basically you accept whatever he would like to talk about. Use open ended responses. "What makes you feel that way", "What worries do you have". etc. Accept what he says. None of that nonsense about "Oh, they don't really KNOW when you will die (they don't)". Just let HIM guide the conversation. And do not bring it up yourself unless it is clear he wishes to speak about it.
As an old nurse "death" is my companion in life; I don't fear it. I DO fear suffering. I have already often talked with my family about my wishes. Made out my POLST with my doctor, and etc.
Wishing you good luck.
You can tell him also that you are opening to talking about anything he ever wants to discuss with you, just let you know. That you are there for him will be what he needs to hear now. And that you will NOT negate what he says.
File under "frivolous" my recent comment to my mate that if I collapse he wait at least 1/2 hour after I am dead to call anyone lest some over-zealous ambulance attendant ignore the instructions on my POLST. I told him wait until I am not only dead, but STONE COLD dead. It may surprise you that for some of us, though old and closer to death, even often when ill, maintain a healthy dose of humor about the grim reaper.
I sure wish you luck.
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jacobsonbob Mar 2021
AlvaDeer--You've made some excellent points. However, I'll add that there can be somewhat of a "flip side" in that it is possible that one can live significantly longer than expected, so we shouldn't treat the elder as if there is a "timer" sitting next the bed.

Your final comment made me laugh (and I tend to agree, particularly if I happen to live to "ripe old age"--with the exceptions being if it's New Year's Eve or the day before my birthday). I thought of the line from the "Wizard of Oz" in which one of the munchkins said the wicked witch was "sincerely dead"--I think that description is synonymous with stone cold dead!
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Here's one I've bookmarked

https://www.considerable.com/life/death/consoling-dying-friend/
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Some of the best times I had with my daddy were as he was actively dying.

Believing firmly in a life after this one, we were able to talk frankly about life, what we'd been through, what we still had, and there was no frivolity (other than RoadRunner cartoons, which he LOVED).

One thing that meant A LOT to me was the 'closure' I received from daddy as I was finally able to talk with him about the years and years of abuse my OB inflicted on me. Daddy cried and felt so bad--but he KNEW and belived me (Something mother has never done) and I needed that, from one of my parents. Daddy apologized for not protecting me--but really? what could he have done? I never talked about it until I was in my 30's.

I didn't need to console dad. He knew where he was going and who was waiting for him. And frankly, dying of Parkinson's is a horrible way to go. He was so grateful to be going home.
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jacobsonbob Mar 2021
Your comment about "closure" hit home with me. While I was growing up, my parents were quite strict, often getting angry over rather trivial things. One morning when I was about 8 y/o, they both went a bit "overboard", and I felt the consequences of it all day when I went to my 3rd grade class. A few years ago, I happened to mention it to my mother, and her response was "oh, you must have dreamt that!". When I mentioned it to my father, he said he didn't remember it, but he told me that if I said so, he believed it, and he was sorry this had happened. He had "mellowed" considerably over the years, and I grew to love him more and more over time, and I respected him that much more for his response
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I think reinforcement of his value, support and contributions as a father could help buoy his mood.    While this is just a supposition, I do think people evaluate their lives as they see them coming to an end, wondering if they were good parents, sisters, brothers, cousins and more.  

Reinforcing that they were allows them to feel as though they did make contributions, were good people, lived a worthwhile life in relationships with others, and don't need to approach death with the nagging thoughts that they "should have done" other things.
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I remember a handful of times I had alone with my father when he was facing death. I let him know how much he mattered to me; how much I appreciated and loved him. I brought up a few topics that were important to me, and he did the same. We talked about spiritual things, and how he knew his life was coming to a close. I believe he'd accepted it. Dad asked me to do a few small things for him, which I was happy to do. Sometimes we didn't even talk at all. It was sweet. It was peaceful. In the following couple of weeks Dad experienced a period of delirium. When he came out of it, he was never quite the same. And then he passed. I am so thankful we had those talks when he was lucid!
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jacobsonbob Mar 2021
CantDance--This was such an "ideal" death setting, if there is such a thing. I'm happy you were able to have this quality time with your father!
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When you think about it, we’re ALL “given” a term of days or weeks or months or years. Some of us then wind up with a doctor’s estimate, some of us don’t.

My father walked out to his garden and was planting his asparagus, and dropped dead. No conversation to worry about.

My mother died for 25 years following his death, first of a stroke and then more slowly of dementia. In spite of the long term before her death, she managed to enjoy a lot of that period in her life. As long as she was able, SHE directed the conversation, and I listened and enjoyed the jokes and participated with the gossip about the family and stories about her grandchildren and arguing with her and listening g to her complaints.

If I were meeting your father I’d want to know interesting things about his family history (if he wanted to share them), his opinions about politics and the Pandemic and sports teams and popular TV shows and the weather.

And I’d ask him if there were any of my thoughts about such things that he’d like me to share with him.

And sitting outdoors if he’s able, and enjoying the fresh air and scenery, is fine too.
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Just talk to him as you always have. If he wants to talk about dying, he will. If he doesn't, he won't. Just maintain your usual relationship with him and let him take the lead where end of life is concerned.

If you don't already do it, always tell him you love him when you leave or hang up a phone conversation.

As for the osteoporosis, his is probably much more advanced than my parent. However, I will say a doctor recommended a daily shot (for 2 years) of Forteo. Last year, she had another bone scan and the results showed her bone density to be in the normal range again. Hasn't had a compression fracture since using the drug. I was totally amazed at results. Hoped for improvement, but never thought it would put her results into a normal range.
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"He is totally alert and bright..."

What did you talk about before someone gave him a timeline? Discussions when together should be the same, there's no need to discuss dying unless he brings up the subject and wants to talk about it. The future? He still has, potentially, 1-1.5 years, not that he can be mobile, but he isn't brain dead either. Ask him what he'd like to do, games, puzzles, take him out for a walk in a wheelchair when the weather is nice? Books he'd like to read? It also never hurts to ask about the past, what it was like for him growing up, becoming an adult, how he met your mother, etc. Jobs he has done, schools he attended.

There are so many things we don't know about each other, the chats could be endless! I wish I could have had those discussions with my mother over her last years, but with dementia it was difficult. Sadly she was the last of the generation on both sides of the family, so there's no one else I can ask...
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Make sure all people understand that we never know how much time a person has. Then use your times together to create wonderful memories. Focus on adding as much love, beauty, and caring into the times you are together.

If this was my loved one, I would also spend time sharing my faith with my father. I am so happy my husband got a chance to do this when we visited his father. We didn't know at the time it would be one of the last few months his dad would be lucid. They had a wonderful time together sharing stories, memories and values. It really helped my husband when his father passed that there was nothing left unspoken.
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I let my father lead the conversation during the time we had left with each other.

We spoke about the things we normally talked about.

Sometimes we didn’t speak. He was content with me just sitting beside him.

The will to live is very strong but I have found when people begin to suffer due to their health issues they grow very tired and look forward to the end of life.
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AT1234 Mar 2021
Thank you for saying that. Sometimes the idea is not scary it’s resting in a saviors arms. If he doesn’t have a belief this is many times when they will express that.
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A year is quite a long time. These are things I’ve found to talk about:

* What’s happening with other people in the family. Trivia are useful when the person can listen, but doesn’t need to have the energy to participate much in conversation. Same with descriptions about what you’ve done recently or places you’ve been to.

* Favourite books over the years. ‘Would you like to read them again – I can easily get them from the library’. Just talk through the stories. Read them yourself if necessary so that you can talk about them. Any conversation that comes along from that. Same thing with videos of old films.

* The background of things in the house – where it came from, the holiday when he got it. You write it up and then read it back to him on the next visit – he may have remembered more.

* What he would like done with anything he will leave behind – where it should go and why. That’s different for really valuable assets, but lots of simple things mean more to the family with some memories written down. It’s interesting for him to talk about it, and can make him feel valued himself.

* Beautiful bits of the Bible – Matthew and the Sermon on the Mount, The book of Job. These spark memories for a lot of people, even just for the language if not the beliefs.

In general, I’d be prepared to talk a lot yourself, quietly, slowly and with pauses. I’ve done this with my people who were also ‘alert and bright’, but easily tired. More interested in looking back than planning the future. You can be the entertainment, prompting ideas for him, and following up things that struck a cord.

You have plenty of time to try different things to try. Give him nice things to think about after you’ve finished your visit. Come back next time to anything he shows interest in.

Very best wishes, Margaret
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bianca12 Mar 2021
Very kind, helpful , thoughtful response. Thanks.
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We are all dying bit by bit, day by day.
The difference is we have not had a doctor say you have XX amount of time.
Should a date matter?
The answer should be no.
Talk to him as you have always talked to him. If you have not been close now is the time to mend fences if they need to be. Talk about things you want to do, what he wants to do. Do them if you can.
Yes talk about Last Wishes, what he wants done as far as treatment if he wants anything done. Ask if he wants Hospice now or later. (he would qualify at this point I would imagine)
After that conversation talk about baseball, travel, play card games. Learn from him. Start getting family history down who were his parents, grandparents, where did they come from how and why? Read books or listen to books on tape.
OH, if his bed is in a bedroom and it is out of the way..move his bed to a room where there is more activity if he wants it moved. Still feeling like you are part of the family is important. Yes you will have a bed in the dining room,. living room or wherever but he is still family.
Oh another thing...don't talk politics
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My mother has been on hospice for almost 2 yrs now. She has no expiration date according to her. Everything is in the present and the future. She is still planning on voting in the next election in 2024! We talk about her next month’s grocery list, the flower garden that she has outside her window, the state of her cousin’s health (who is her age - 95 yrs old!), and what’s on TV, her books that she listens to on tape, and once in a while our loved ones that have passed over. She has end stage chf, invasive squamous cell carcinoma, a pace maker battery that is worn out (its 11 yrs old), and the latest - Aggressive Inflammatory Breast cancer and her tumors are leaking. And she’s still managing in her own home! She will never talk about death. She will never go there - even with the spiritual advisor from her wonderful hospice team. I don’t know how she feels about death. She has no plans now for death. She is still very present.
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Daughterof1930 Mar 2021
Your mom's denial of her circumstances may be exactly what’s keeping her from huge depression, seems it’s the only way she can cope. It’s kind of admirable. My dad was very focused on leaving this world, I understood it, but it was also hard to constantly hear.
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When my dad was dying I let him lead many conversations. What he wanted to talk about, we discussed. He enjoyed remembering old experiences and people he’d known. Though there wasn’t dementia, I listened to many of the same stories over and over. It gave him comfort and it wasn’t asking too much for someone to listen. I wish you peace on this road, it’s so hard
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Invisible Mar 2021
My mother was on oxygen and said it was hard for her to talk so we just spent time together doing other things. She had taken care of her affairs already and did not want to dwell on death. My father enjoyed talking about his childhood. I would also suggest this is a good time for hugs and physical contact.
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There is a book by Don Piper “90 Minutes in Heaven” that I read about his death and then being brought back to life. It gave such a wonderful picture of life when we die and go to Heaven. Even for a nonbeliever, it might give them another perspective to think about.
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You are focused on your own fears of dying rather than your father's needs. Have a conversation with him, make sure he understands and then get back to normal. If decisions must be made that involve him, bring them up matter of factor, find out what needs to be done and do it. There’s no reason to constantly talk about dying but you must allow him to talk about it and process it if he wants to. Follow his lead. Through this process, you may find yourself better able to face your own fears of dying. We are all going to do it; that’s for sure.
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Take a look at Stephen Levine, "A Year to Live" (Bell Tower/Crown Publishers, 1997, There's lot of helpful advice here.

Love and Prayer
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He's not dead so talk to him like you would any other day. Dr's only give you a guestement of death not anything else. Reflect on how you would like to be treated. Its true you do need to tell him of his situation, but leave it at that and get on with your normal activities together. I would rather think of life!
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You could suggest a good book, both of you read it and then talk about it.  Kind of like a two person book club. If he can't hold a book or reader or can't see well, you could do audio books.  You could take a bunch of pictures, ask him to help you organize them with information about each one.  You could write on the back of the photo what he tells you about it.  There are virtual reality goggles/headset where it really feels like you are taking a trip into whatever you are watching.  I don't know if you can rent them or if you would have to buy them, but might be worth looking into if he has always wanted to travel and never had the opportunity.
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I’ve never heard of a doctor saying a year. A lot can happen in a year. You may pass. We aren’t promised tomorrow. If he is bed bound thats eternity to him and he may be ready. Talk to him normally because it is.

I agree with most here - if/when let him lead those dying conversations, don’t move his bed, his suffering is coming to an end, he may have important things to say, let him. Let your heart lead in your responses.

90 min in heaven is a great book.
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1stly, there are no cures, but there are things you can try to make him medically better. I found this on the internet:
Osteoporosis:
Osteoporosis causes bones to become weak and brittle — so brittle that a fall or even mild stresses such as bending over or coughing can cause a fracture. Osteoporosis-related fractures most commonly occur in the... mayoclinic.org
Symptoms:
There typically are no symptoms in the early stages of bone loss. But once your bones have been weakened by osteoporosis, you might have signs and symptoms that include:
Back pain, caused by a fractured or collapsed vertebra
Loss of height over time
A stooped posture
A bone that breaks much more easily than expected
See more
Causes
Your bones are in a constant state of renewal — new bone is made and old bone is broken down. When you're young, your body makes new bone faster than it breaks down old bone and your bone mass...
Your sex
Age
.
Race
.
Family history
.
Body frame size
See more
Treatment


For both men and women at increased risk of fracture, the most widely prescribed osteoporosis medications are bisphosphonates. Examples include:
.
Alendronate (Binosto, Fosamax)
.
Risedronate (Actonel, Atelvia)
.
Ibandronate (Boniva)
.
Zoledronic acid (Reclast, Zometa)
See more
Not medical advice. Consult a doctor for medical advice.
© Mayo Clinic
*****************************************************************************
I also have severe stage 3 ( going on 4 ) Osteoarthritis, but it almost never gets into the Thorax region in the spinal cord, which controls breathing ( Diaphram ), which will cause him to pass away, so he may have many more years left, but I do not know his case, or his physician(s), but I would get a 2nd and 3rd opinion on his case before prepping him to pass away.

Also, Doctors cannot give you anything but their best 'Guesstamate' on how long he may have and they could be totally off, and when he lives a month or two or even more after the Doctor's statement, the Doctor looks GREAT!

In my case, I am donating all my organs to science via my Driver License, so I don't care what happens to me after the 'Day', and it is also in my Will, so in case someone misses my final wishes, my entire family knows of what I want to be done, and in my living Will, I do not want any kind of help in 'not kicking the bucket.' besides keep me comfortable and that is that.

If your father has been informed of what the Physician have told you, then he already knows, and just follow his lead, since you mentioned that he is still bright and aware and awake, so if likes sports, what ad talk about sports, if it's Western's, then talk about those movies, and my God, you can take just about any topic and talk it into the ground, without talking about Dying. It's his choice now, and let him choose. PERIOD.

This is just me, but if anyone starts talking about my demise, I am kicking them out of my room, and come back when you have something that I want to talk about, and I some days, it may be 'passing away' but you don't need a book.
I have never heard of any Author who has totally passed away for days or weeks, or months, come back and wrote a book about 'Passing Away', and if they have, buy that book to see how they did come back!!!!!

Good luck to all of you, and the very best to all of you!
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You let your father lead the conversation. If he wants to talk about dying that day, that's your topic. If he wants to talk about sports or politics or what's on tv or past memories, that's what you talk about.

Once when my husband said to the Hospice nurse, "I am a dying man," she paused and answered, " Today? ". He was obviously not dying that day and her answer made us all realize we could use the day to talk about and do other things.

I often think of that nurse's answer when I am having a bad day of my own!

You don't need to begin each day with conversational agenda. Just love him and be there and respond to the day at hand.
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Read 'Proof of Heaven' with him, by Dr. Eben Alexander, a neurosurgeon who had a near death experience and speaks of the afterlife with SUCH loving and awe inspiring gusto, that he helps removes the fear of death quite dramatically.

Good luck!
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I just spoke with my sister like always. She appreciated that I treated her like she was still living when others coddled her and treated her like she was already gone.

People got upset that I gave her a hard time and joked with her but, she loved it and thanked me many times for just treating her like her.

Rejoice that you have so much time to continue to share with him. Don't waste energy on the future, none of us knows if we will be here tomorrow, so embrace today and just love him and treat him like you always have. (Assuming that you have a good relationship. ) if you don't, now is the time to make things right, offer and ask for forgiveness and let bye gones be bye gone.

Oh and enjoy some good food together with dessert first.
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AlvaDeer Mar 2021
I love this answer. Your sister was very lucky to have you.
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My husband fell and became (after surgery) a quadreplegic. He spent 8 months in hospitals/nursing home. I was during height of pandemic, and couldn't use the gym. Dr. said nothing more to be done (including surgery), and told him. I brought him home for in-home hospice - who were great, where he spent the last 4 months of his life (including his 77 zoom birthday party), which was a blessing, since I had that time to tell him how much I loved him. He wanted to die at home. He was completely bed-ridden, since he couldn't move any limb or head. During the 1st week, I made a list, specifically what he wanted (which funeral home, to pass our house, church, burial-he had plot and repast). After that, I never brought up specifics, but he told me who to inform (which for the past year was sending people updates on his condition). He loved his TV programs (on the wall unit behind the TV, hung all his cards), I would cook his favorite meals, though had to mince them up so he could swallow. Hospice sent aide every day to wash and change him (with my help), a nurse 2x a week to check his catheter, BP, etc. The last 2 weeks, he said I don't think I'm going to last long...he got tired of doing the same things (either looking at the TV or ceiling), couldn't go outside...after that, he stopped eating, (gave him ice cream for breakfast), then stopped drinking (even sips thru a straw). Eventually, I was giving him morphine and larazapam orally, so I knew he was not in any pain. He had stopped talking, yet I knew he could hear me. The last evening, I stayed by his bedside mainly holding his hand, reminding him how much we shared together and that I'd miss him so much. Then sat in a chair behind him, to watch the news. I must have fallen asleep, when I woke 1-1/2 hrs later, he had passed. It was an exhausting 4 months, barely slept, listening for the baby monitor to hear him breathing (he at that point was also on oxygen machine) The meds and supplies were through Hospice and medicare. As for what we talked about: mainly family, what he would like to do (if he could), and thanked him for the wonderful times spent with him, and he still had a good sense of humor. He handled it with such grace, even though I knew he must be scared, but reminded him of all the people that passed before him, and were waiting for him (probably to have a good card game to play together)...I think that gave him peace. I hope so. BTW, his daughter came over finally, after 4 months, on the morning that he passed, to say I love you, but by then he couldn't talk anymore. Just talk about things that interested him, and let him watch comedy shows. Have the aide give him a shave, besides the sponge bath...some men like to be clean-shaven...uplifts their spirits. God bless you and your father.
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Forteo helps many people...it's a daily shot with a tiny needle like an epi pen.
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