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Hello SI. My father had a surgery last month that he never recovered from and has slowly been slipping away for the past month. He had been in the hospital ever since having the surgery, and was in ICU for two weeks after catching pneumonia. As of yesterday my mom finally came to the decision to get dad transferred to a "Hospice house" so that either his breathing can be stabilized enough he can be returned home to pass, or so he can be in a calm environment (the hospice house itself) to go with dignity. I thankfully live locally and have been able to be a support on the sidelines for mom when I'm not having to stand alone myseslf due to custody issues/STBXWH. I have found ways to get mom more support through this process like getting my sister flown in for a month when dad was first going downhill, arranging with my sister other relatives who could be called in to help mom, and trying to make plans for when the inevitable happens. Just recently my sister and I had to reassure mom she's making the best decisions she can for dad with what medical issues there are as extended family is causing...drama over what is/isn't being done for dad. A complicating factor is that dad's mental state was already deteriorating from Vascular Dementia over the past three years, so moving him from place to place and getting him the care he needs has been...less than ideal for his peace of mind.

I know I am a person who copes by having plans, back up plans, and back up plans for the back up plans. I have never had to prepare myself for losing a parent while also dealing with the death of my marriage though. My questions for SI would be:

1. What kinds of timelines might I expect for my father's passing?

I know that this will vary greatly, but knowing a range of possible soonest to possible latest that others have experienced would somewhat help me grapple with what is going on. We're also being given a back and forth on "best practices" for letting him go - feeding tubes/fluids versus medications only- so this makes the letting go even harder and is adding to the stress/guilt for my mom.

2. Ways to continue support for my mom after it's all said and done.

My parents have been married since 1975, so losing dad will be very hard on mom. She also stubbornly took up all of his care and refused to get other services/help in the past few years as she'd keep saying "he's not at that point yet." I know she's now feeling guilt that she didn't push for more to get done sooner, but I want to make sure that she doesn't let herself slip away after dad goes.

3. Any suggestions for talking to my four year old son about losing his grandpa?

I honestly do not know how to approach this with my son now. He loves my dad. He also now thinks that when people go to the doctor/hospital they go "poof" and never come back because both my STBXWH and my father went into hospitals around the same time (STBXWH due to mental health) and my son has not been able to be near either of them since. My son had a mini meltdown when I said I had to go to a check up with a doctor because he thought I was going to "go poof" and never come back either. Before my STBXWH's affair and leaving us I had an idea of how I could talk about it, but what I would have said then would only make my child worry more now that he's going to lose me.

Edit to add:
Number one was answered just this morning. My father passed away at 12:47am. We are notifying extended family.

[This message edited by Kanashii at 6:51 AM, Friday, July 22nd]

I'm sorry to hear that you have this additional stressor and grief to deal with right now. But it sounds like this is probably the best decision given the circumstances you all are given currently.

In no particular order:

Talk to the hospice people about talking to the kiddos. They have books that are written at a childrens level to help them understand. It can be extremely helpful.

I they have accepted your dad to have care in the hospice house then the anticipated time left is usually fairly short from my experience. They also usually will stop IV's, antibiotics, and tube feedings when someone goes into that level of care. It is a transition from curing to comfort. I would encourage you to keep him in hospice house until the end, not take home if your family can afford it. In home hospice care falls to the family, however you will get some support you have to pay out of pocket for 24/7 care. Your mom should be able to spend this time saying good bye, not being a caregiver.

Most Hospice companies have bereavement counselors, and support groups. Encourage your mom to participate in it. Get her a memory book so she can share some of her favorite memories of your dad it will help her navigate the grief process, and give you some memories to look back on from her perspective.

I too want to say how sorry I am that you are dealing with the loss of your marriage and - at the same time - doing everything you can to help with the impending death of your father! Sending you virtual Hugs!

While I didn't have a child to comfort, I too was in the traumatic post-Infidelity phase of my marriage while my father started his several-year decline (also from vascular dementia). Looking back he was changing in subtle ways long before we knew he had a problem. One thing that hurts to this day is how my father withdrew from me as a result of his emotions surrounding my WH, whom he really had liked. Empathizing with his betrayed daughter seemed too much for him. I suspect it reminded him of everything he didn't want to hear about women! (My mother had divorced him but I don't think it was for infidelity. He drank heavily for years until he hit bottom.)

So it sounds like you are doing the right thing with Hospice placement. I agree with what Tushnurse says. I would hope your relatives familiarize themselves with what Hospice is about so they all can hopefully get on board with this. Do what you can to reach out to them, if they don't get the decision, before it's "after the fact" would be my advice.

Right now, everyone in the family is dealing with "anticipatory grief." It affects people in so many ways. We can react unpredictably, to avoid having to feel the weight of our own grief. It can be easy to point fingers but really, it isn't helping anyone to blame anyone about a loved one's care. Very common, though! My wish for you is harmony and peace at this time.

Having gone to a GriefShare group myself, years after my Dad and sister passed, I also can assure you it will be a big help and comfort for your Mother when that time comes.

I am so sorry you are going through this. But you sound very strong and put-together and every family needs someone like you to get them through.

My experience with Hospice for my Mom was very positive. She did not want to leave home so she stayed in her room, surrounded by all her 'things' until the end. I was very fortunate that her main Hospice nurse lives across the road from me and was very available. One thing my Mom really enjoyed was her hospice care-giver that came wice a week to bathe her, do her nails and fix her hair. This really lifted her up. We just wanted everything to be about her. Her Hospice care lasted two months until we lost her. Her passing was very peaceful thanks to the drugs to dull her pain. Mom was very aware and didn't have any type of dementia so we got to enjoy her until about a week before the end when she started to sleep a lot. Don't hesitate to accept help from other relatives and people if they offer, to give yourself a break. They WANT to help. I miss my Mom everyday as she had lived with me for years .... but I know myself and others did all we could for her and that helps.

I am so sorry that you are facing this, Kanashii.

I just went through this with my Daddy last October. I'm very grateful that my career (RN who has spent the last 22+ years working in long term care) prepared me for not only going through that process myself, but also for helping my mom and my siblings. Typically for admission to a hospice house the physician certifies expected 3 weeks or less prognosis. As you know, nobody in health care has a direct line to God to know exactly when someone will pass.

About food and fluids: A hospice nurse many years ago explained this to me and I found it beautiful. Our bodies know how to do all of the processes from birth to death. When labor starts, (most of the time) the body handles everything. Labor starts, contractions open the cervix up and push the baby through the birth canal. When the urge to push happens, Mama pushes and baby is born. Baby goes from fluid to air around him/her and the first breath is instinctive. So on through life. And at the end, our bodies know how to die. Everything slows down. Hunger is not a driving force. The appetite disappears because digestion is slowed to almost non existent. Thirst diminishes and as dehydration progresses, endorphins are released. Those are the body's natural "feel-good" hormones. Since there is very little oral input, the person does not have to eliminate. This is a good thing because it can be very painful to have to move around to use a toilet or bedpan, or to have incontinence care performed. Also, when the hunger instinct has diminished, if food is--shall we say-- strongly encouraged or forced, it tends to sit in the gut, causing gas and discomfort.

So, for extended family who feel that dad must be starving, and why aren't you feeding him, or putting in a feeding tube? Explain this to them. He isn't hungry like you or I would be at 1 pm after no breakfast. His body is doing what it is supposed to do. Artificial nutrition/hydration do not prolong life. They prolong death.

Daddy had nothing by mouth for the last 2 weeks except milk shakes from Sonic and Diet Coke. When he started refusing those, we knew what was happening and we didn't push. He would still ask for sips of water or other fluids and we gave him those when he asked. I will say that Mama had a harder time with this and would still ask him if he wanted some yogurt or applesauce or mashed potatoes. But we all respected his wishes which were communicated fairly clearly despite his dementia.

For Mama afterward, we (I have a sister and brother as well as foster sister) have been very intentional in spending time with her and acknowledging her grief, especially during holidays. On their wedding anniversary, we all visited separately... our visits overlapped by a few minutes and she was not alone for more than a couple of hours that day. She asked me to prepare the meal she had eaten on their first date--Lobster Newberg. I'd never made it but you can bet I found the ingredients and made it for her, and sat down to dinner together while she told me about their dating and early marriage.

Please, please reach out to me if you have other questions or just want to talk to someone who understands.

HFSSC - Thank you for taking the time to respond to this the way you did. I did not have the appropriate amount of time to really get indepth with my response this morning.

You are very correct on all of it.

Thank you HFSSC. I read to my mom what your hospice nurse said and it made her feel better about the decisions that are being made. Ironically enough, the drama from the extended family is centered exactly on what you wrote about - feeding tube/fluids. I also let her know about the 3 weeks or less prognosis from a doctor (for being in the hospice house) and that let her know she's doing the right thing.

tushnurse: Thank you for your suggestion of asking the staff for something to help explain what's going on to my son. They did not have anything immediately on site, but said they would be sure to get something for the next time I visit. They also mentioned having programs for children during the summer that I will use if my son needs them.

Superesse: yes, vascular dementia is an awful disease. I had something similar, where my dad slowly withdrew from me and saw me as more of a parental figure who he "had to listen to rules from." My elder sister he treated differently as she is a single career woman -unmarried without kids. Her he would want to hear about her adventures, job, what she was up to. Despite all that, a little over a month ago when he somehow figured out through the dementia that my STBXWH had cheated on me my dad affirmed me and everything I was doing to protect myself and my son. It was amazing seeing a piece of my dad come out when I really needed him. I just wish he was able to stick around a bit longer for my son and me.

Jeaniegirl: I would say my sister is also a strong/well put together person and we've leaned on each other a lot through this. She's been checking with our cousin who did all of the end of life/finances things for our grandmother and she's been a big help on figuring out what next steps may have to be. It also helps to hear from others how positive their experiences with hospice are.

Mom is still second guessing herself and had gone back/forth the whole car ride back to hospice on if she should take him out of hospice house or not. In the end, she's probably going to let him stay at hospice house unless he improves to a level that he says he wants to be home. He's totally unconscious now, so there is no point in trying to move him.

While not a nurse, I worked in clinical services with a hospice agency for eight years. Everything said here by the nurses is accurate. You don't want to add an extra burden on a body that is shutting down by forcing it to engage in digestion, which is what IV fluids and tube feeding would do. It goes so much against our very nature, as social creatures because we are conditioned to offer/prepare/feed food to people when they're struggling, whether it's from physical illness or psychological stress. But in this situation, you have to follow the cues of the patient and respect them when they refuse, without guilt.

I have recommended this booklet on this site several times to people who have questions about loved ones in hospice care - it is called Gone From My Sight. I think you can get a Kindle version now, or read it online. It is hands down the most succinct, helpful literature out there for lay people there is. It spells out the dying process and what signs occur at what stages, starting at several months out to hours away from death. It's a very quick read, and if you get a hard copy to keep at the hospice house, anyone who stops by can glance through it for reference. Some hospice houses keep them available for loved ones to read, so I would ask if they have a copy. I used to carry copies around and when I felt it was appropriate, share them with caregivers. My hospice agency provided them to the clinical staff to disburse where appropriate. But it helps to get everyone on the same page as they are reading what the experts have observed over decades of studying the various phases of death.

And yes, our hospice agency offered a summer camp for children who experienced the death of a loved one. Some of those kids get so much out of it, that they return every year, then eventually become peer counselors/volunteers at the camp when they get older. Also, as several have suggested, the hospice agency should offer bereavement services, through individual counseling from bereavement counselors to groups. They an be incredibly moving experiences.

Good luck getting your family on the same page; again, this is where the nurses and/or social workers can step in and help facilitate the conversation. It won't be the first time they've had to provide this kind of support, and it won't be the last. It's part of their job.

Oh sweet lady. Im so sorry you are going through this…these two heartaches so close to each other. 😢

I first want to say (even kindly) that your extended family simply doesn’t have any say in this. Your mom either knows what your dad would want, or she knows how she wants to handle this time/situation. I’m sorry they are voicing opinions when this is up to only your mon and whoever she wants to include, such as you and your sister. (And brother.)

Sisters can be really wonderful! They are the only ones (and brothers) who share their childhood and immediate family. I’m so thrilled - however concerned he must have been - that your daddy figured it out about your Wh, so that you could have the amazing experience of him supporting you and your son.

I understand you are concerned about your son. I think he is going to follow your lead. If your family holds strong to each other, and he can see that his life is intact and he will feel safe as you all move on.

You’re a good mom, sister and daughter. Y’all will get through this. Listen to the smart voices on this site regarding the hospice/end of life process.

You and your family are in my 🙏.

Edit. Sorry about the shades emoji. It was slip and I can’t fix it. No disrespect intended.

I’m so sorry you are having to lose your Dad. It’s something we know will happen one day, but not now!!!

My Dad was supposed to start chemo on a Monday. I was talking to an ER Dr friend on Friday night and he asked if chemo was Curative or palliative. We had no idea I thought all chemo treatments were curative or they wouldn’t do it. He said your Dad needs to ask his Dr. He was in the hospital so I called and talked to him and my mom. This was the first time it really hit us that he might be dying. My Dad said I’m asking the Dr tomorrow and if it’s not curative I want to be released on hospice. He was not interested in feeling worse.

My Dad came home on Monday and spent quality time with all of us, slept all day Tuesday and passed at 6am Wednesday. I really think hope kept him alive, he thought chemo meant a possible cure. I believe my Dad decided to pass and was at peace with it. I was thankful he made the decision he did. I didn’t want him suffering any longer.

Prayers for you and your family

[This message edited by Tanner at 12:56 AM, Friday, July 22nd]

Thank you for your responses Tanner, WhatsRight, and number4.

My father just passed away around 12:47am this morning, so a little over an hour ago. We have begun notifying extended family. I've called my sister and she will be flying in later this morning.

The hospice doctor told us dad had anywhere from a few hours to a few days. I'm shocked that he passed this quickly entering hospice house and still don't feel prepared for him to be gone. He only went in to hospice on Wednesday evening. He was opening his eyes and tracking people on Monday but still seemed like he was in a fog. A part of me keeps thinking this is some cruel joke and he still has a few days left.

If anyone has advice on the "what comes next" part that would be great.

Oh sweetie, I’m so very sorry.

Well, it sure is devastating to you all that he is gone so soon. But if his situation was anything like my mom and dad, there was just no quality of life left.

His work is done, but y’all have lots of grieving to do. I promise you will get through this. Y’all will support each other through the whole thing. And let your love for him and each other see you through. Pay no attention to the relatives who have opinions about what should have been done. His quick transition proves your mom made the right choices.

And your son is going to get through this. He will take his cues from you and your family. This puts a weight on you, but also serves as an extra impetus to move through it and heal.

I will be praying / having good thoughts for you all.

Please come here when you can…when you need to. Let us know how you are.

I’m so very sorry.

[This message edited by WhatsRight at 12:31 PM, Friday, July 22nd]

I’m so sorry, it’s like with my Dad he went so fast once he went on hospice. Like it was so very well said earlier, the body knows what to do and it was very peaceful.

My Dad was my hero and friend, he was a great man and the best compliment anyone could pay to me is "He’s like his Dad".

It’s going to be unreal for a while. It’s been almost 2 years and I still want to call him all the time. I haven’t taken him out of my phone contacts, don’t think I ever will.

The time we spent together as a family preparing his funeral, was very helpful. Again so sorry for your loss.

My sincerest condolences, Kanashii. Losing a beloved parent is devastating.

I will reply to your "what comes next" question and share my own experience from when my father passed.

First order of business is to take care of yourself. You know the drill: stay hydrated, rest when you can, delegate as much as possible, simplify tasks.

During all this time, you'll want to be available for your son. You know him best so you'll do the right thing. If he feels that you can handle things, he'll feel safe.

Next in line is to be there for your mother. It's okay to take the cues from her, just stay close by and see that she gets food, drink and rest.

It is likely that she is worn out from taking care of your father, and you may have to navigate the formal procedures by yourself. With your sister there, maybe the two of you can split the responsibilities for what is immediately necessary. By all means, keep your mom informed and have her in the room when you discuss funeral arrangements and the like, but IMO it's a good thing to give her the feeling that she is safe and someone she loves is handling these matters. On the other hand, if she wants to take charge, let her do so.

From my experience, there are three levels to manage: people, paperwork and procedures.

1. People: notifying family and friends; figuring out who will be coming to the funeral; manoeuvering phone calls; sitting with those who share your grief; setting up a network for your mother, and one for you.

2. Paperwork: gets divided into "Immediate" and "Can Wait". Immediate means funeral home, Social Security, means of income, anything financial that needs to be shifted ASAP. You may find that there is not much that actually cannot wait a few weeks. Just make notes about what needs to be handled later, and add as you think of it. The idea is to keep yourself from feeling overwhelmed right now. You need time to process the shock, expected though this death may have been. Then, you can deal with bank accounts, utilities, subscriptions, anything that was in your father's name and needs to be transferred, etc.

3. Procedures: anything requiring a strategy or action. It begins with the plans for the funeral or memorial service (who will come, where do they sleep, what will they eat) and goes on from there.
Is travel on the horizon, maybe your mother will want to visit your sister for a while?
What about medical checkups? Chances are they have been put on the back burner while caring for your father, so it might be good to make appropriate arrangements.
Sooner or later, the question of living arrangements will arise. We were fortunate that my mom knew what she wanted, which was to stay in her home, and this was possible. But we revisited the question every now and then, just to make sure it was still the best choice.

There are good sources online and I'm sure you will get more responses from other members.

Thinking of you and sending you strength.

One thing…

Did your dad happen to be in the military?

If so, if you wish, ask the funeral home about how to set up some level of military involvement for the services / graveside.

They will know what to do.

[This message edited by WhatsRight at 12:40 PM, Friday, July 22nd]

I am sorry about your father. This is so much for you to deal with.

As for your son, please look online for books. My DS was his age when his grandparents passed and I found a few age-appropriate books to help.

I hope I get this message across correctly…
It’s something I have shared before. I once was given the difficult task of telling a young woman (13) that her single-parent mom only had a couple of days left due to cancer. Before talking to her I met with her doctor, the chief nurse and a pastor. When asked, they all said the girl had been informed of the high likelihood of her mom’s death from cancer, but none of them had told her how short the time left really was. When I questioned them deeper it turned out that none of them had told the 13 year old using words and terms that she clearly understood.
She had been told her mom would take the long sleep, the fate that awaits all of us, the inevitable rest, be with God… She had never been told her mom was DYING.

Those were more-or-less the words I used: Honey – Your mom is dying, and probably only has 48 hours left. Her surprise clearly told me she hadn’t really comprehended the fancy words for death. The finality.
I made sure she understood what I was saying. I helped her cry, dealt with her initial rage and then helped her plan what to do for those remaining hours.

It’s been years since. It didn’t go worse than so that her three young kids call me grandpa.

So, my advice: Make certain that your kid understands the terms. Like the long sleep… wouldn’t a four year old fear going to sleep if he saw his granddad placed in a box and tucked into the ground while sleeping?
Using age appropriate words and in as gentle and kind as manner as you can, make it very clear what’s going on.

I'm sorry for your loss.

Tournesoleil overs what comes next.

Let your feelings flow, when possible. The practical matters interfere some, but that just delays a mourning process a bit. Sometimes it even serves as a welcome distraction. My reco is not to push the pain away ... if you love someone, loss is painful, especially when the loss is as final as this.

My mom had pancreatic cancer and passed less than a month after she told me. My sister, brother and step-sisters were able to be there. Some of those hours are the sweetest I've had. The loss was so sudden. Even when you're ready, you really aren't.

A song I heard a long time ago said something like I have no words to take away the pain, but I'll help you cry. Keep posting because we can help you cry.

I’m so very sorry for your loss. I am praying for comfort and strength for you and your family.

If you happen to check in here in time I second the suggestion for military honors if your dad was a veteran. That was a powerful and special part of Daddy’s service. The funeral home will make those arrangements.

It’s been 9 months and I haven’t really broken down yet. At the beginning I was the one handling everything and helping my siblings. I sang and led the music for his service (my sister played piano and brother gave the eulogy). I didn’t want to let anyone down. Give yourself permission to break down. I wish I had.

Peace,

HF