Preparing for losing my mom - update advice please

[lauraw4321]

I wish I had a better way to title this, but I'm looking for advice. My mom has aggressive cancer and is in poor overall health. I'm sure our time together is limited. We're taking a family trip to Disney World next week, which of course will be wonderful, and we'll get lots of pictures. My mind is spinning. What should we focus on during our limited time? I'm an only child and have three daughters. We won't tell them until we get back. 

Advice for helping her with chemo? Advice for helping my dad? 

 

Edited May 20, 2021 by lauraw4321

[Katy]

I’m sorry you’re going through this. Other than making sure everyone knows they’re loved I don’t have any advice. 

[fairfarmhand]

My biggest piece of advice for this situation is to prepare for people to act weird. You don't have siblings to get weird, but your dad might and her siblings might too.  Even your mom may deal with some weird reactions and feelings. 

Nobody will be at their best and expect that. Give lots of grace and give yourself grace too.

[lauraw4321]

I think my dad should retire. Don't you? He could probably go back later if he wanted to. They wanted to take my daughters on a trip this summer and I'd been dragging my feet planning it.  I'll make that a priority as well. 

[mommyoffive]

I am so sorry.  I am sending lots of prayers to your mom and your whole family.

When my grandma passed she had done a lot of preplanning for her death. She did this before getting cancer.  My grandpa had already passed.  She got rid of things at a big level to ease that burden.  Went over her will with everyone and named an executor  for her will.  She went over with her daughters what they were getting in the will.  Everything in the house was marked on who it was going to be given to.  

Then she also did some videos and recordable books for great grandchildren.  Having her voice as part of regular day as the kids have the books read to them was such a good thing.   For me too, I always want to remember what people sounded like. 

[mommyoffive]

3 minutes ago, lauraw4321 said:

I think my dad should retire. Don't you? He could probably go back later if he wanted to. They wanted to take my daughters on a trip this summer and I'd been dragging my feet planning it.  I'll make that a priority as well. 

Yes plan that trip now. 

Have the doctors given your mom a timeline? Is she treating her cancer now?  

Can your dad take FMLA?  

Does he want to retire?  Can he financially retire?  I would worry a little about him retiring and then her passing away.  I think dealing with both would be really hard to do.  

[lauraw4321]

Just now, mommyoffive said:

Yes plan that trip now. 

Have the doctors given your mom a timeline? Is she treating her cancer now?  

Can your dad take FMLA?  

Does he want to retire?  Can he financially retire?  I would worry a little about him retiring and then her passing away.  I think dealing with both would be really hard to do.  

FMLA - I didn't think about that. He probably could retire, but I'm not sure he wants to. FMLA is a great option.

She'll be starting treatment soon. We don't have staging yet, so it's possible she may decide not to treat it. But for the now the plan is to treat it.

[Innisfree]

14 minutes ago, lauraw4321 said:

I think my dad should retire. Don't you?

First, I'm so sorry.

Second, regarding the question above: what does your dad want? What does your mom want? It might be that family leave would give him the time he needs with her, and that having his job to return to later would be beneficial. I wouldn't necessarily push for retirement unless he and she bring it up as something they want. Losing all routine and familiar patterns at once might be more harmful than helpful.

If your mom is willing, I would record her voice talking about her childhood, memories, and family members who are gone now. I would go through family pictures and get everything labeled. Do the same with her recipes, if they might be meaningful. My parents were able to tell me a bit about the people mentioned in old recipes: some names recurred frequently, and now I'm glad I know at least a bit about those people. Aunt Jane's gingerbread and Sadie's spoonbread go back a long way.

Take pictures if your mom is comfortable with that, especially pictures of her with your kids and your dad. Make sure your kids have copies of those in a photo album of their own, and if they're young still, take it out and talk about those occasions and how much she loves (loved) them often in the future. Help them build and keep memories.

Sending lots of hugs. It's hard.

Edited May 11, 2021 by Innisfree
Spelling

[lauraw4321]

I feel like I can’t get anything done. I met her for lunch and I don’t think she realizes the situation fully yet. I also don’t know whether to tell my kids what’s going on before the trip. She’ll have to take it easy the last day. She may have the port put in before then and they will ask. I have lots of complicated feelings about her and some rocky things. I never expected to hash them out / resolve them, but realizing the reality of that is harder to accept now. 

[Catwoman]

I’m so sorry, Laura. 

I don’t think I would burden your kids before the vacation. I would rather see them enjoy it fully, rather than have a dark cloud hanging over it. Also, your mom may not want anyone to treat her differently, and would probably prefer to see your kids enjoying themselves, as well, so they will always have happy memories of your trip together.

[lauraw4321]

2 minutes ago, Catwoman said:

I’m so sorry, Laura. 

I don’t think I would burden your kids before the vacation. I would rather see them enjoy it fully, rather than have a dark cloud hanging over it. Also, your mom may not want anyone to treat her differently, and would probably prefer to see your kids enjoying themselves, as well, so they will always have happy memories of your trip together.

Thanks. That was my first instinct but then I started doubting myself. 

[Innisfree]

If you're comfortable sharing, how old are your kids? If they're going to notice things are different, I might give at least a partial explanation before the trip.

[lauraw4321]

2 minutes ago, Innisfree said:

If you're comfortable sharing, how old are your kids? If they're going to notice things are different, I might give at least a partial explanation before the trip.

12, 10, 7. I don’t think there will be anything noticeable to them, except a port if they do that beforehand. 

[prairiewindmomma]

Do a family photo before the hair goes. 
Enjoy the trip.

Ask whatever family history medical or background questions you need to.

Think about what you might need to process in the thoughts and feelings department.

We did a hand casting thing from Casting Keepsakes. Whatever tangible thing your kids may need—taking photos, doing art together, making a memory box. Kids do well with tangible things to cope with the intangibility of death.

It will feel like memories will never fade or be forgotten, but they will go all too quickly. If you can do video with her voice, capture it.

One thing I did was learning how to make a few family recipes. I had the recipe but I needed technique.

Hugs.

The chemo will support itself out. So will the rest of the physical stuff. I would review advance directives and have everybody on board with that. Things can get...complicated at the end without that express communication. Even then, with emotions, it can get ugly. I have stories, but pain meds, feeding tubes, DNR...sort that out.

A more modern issue—sorting out the digital legacy. Make sure dad has passwords. 

[athena1277]

Several people mentioned things to preserve memories.  I bought a book like this for my grandma to fill out several years ago.  She’s still living, but I know it will be a treasure when she’s gone.  There are several different ones you can get.  
 

[fraidycat]

3 hours ago, lauraw4321 said:

I think my dad should retire. Don't you? He could probably go back later if he wanted to. They wanted to take my daughters on a trip this summer and I'd been dragging my feet planning it.  I'll make that a priority as well. 

I'm so sorry you are having to deal with this.

Retirement is big emotional upheaval unto itself. Many people lose their sense of direction and purpose for awhile after retirement and experience a whole range and rollercoaster of emotions along with it. So, I think your Dad should only retire if he was already planning to retire shortly and wants to. Keeping his job may keep him emotionally healthier in the long run.

[Ottakee]

If she doesn't have Hospice care, I would try to set that up asap.  They are awesome through the transitions.

[lauraw4321]

8 minutes ago, Ottakee said:

If she doesn't have Hospice care, I would try to set that up asap.  They are awesome through the transitions.

I am a big fan of hospice - they were amazing with my grandfather. She's not ready to consider that currently, but I will be ready to move forward with that as soon as she is. 

[Faith-manor]

Three things.

Keep it easy. At the end stages, folks are often physically overwhelmed. Visits and memory making should be very flexible and low key allowing for naps and such.

Make sure that the practical things are taken care of like power of attorney, deeds, trusts, knowing where all the important papers are, etc.

Think ahead about the funeral. The dying often have a lot to say about how they envision their funerals. But funerals are for those left behind, the deceased will never know. Do what is best for those who have been in care giver and death watch roles. Don't do what my mom did when my dad died. She and my sister as well as me, had had very little sleep in the last two weeks prior to his death. We were mentally, physically, and emotionally exhausted. Mom insisted on doing what "he would have wanted". She regretted that decision on the day. So meet with your siblings, and make decisions about what is best for all of you and your families.

[Harriet Vane]

So sorry. Hugs and prayers for you.

[iamonlyone]

You are doing a great job of going on/planning the trips she wants to take and has been looking forward to taking. You might see if there is anything else she particularly wants to do.

My mom wanted to have a big birthday dinner at the town's senior recreational center. She provided the food but donations were accepted, and that money was donated to the center. Friends and family members flew in from all over the United States. It was a lovely celebration and a great way for people to spend time with her.

Consider palliative care. People can have palliative care while still getting treatment (unlike hospice). Then, they can transition to hospice care, as needed.

This is probably obvious but should she choose chemo, plan on giving your parents extra support the week afterward, if possible. I spent a lot of time reading to my mom. Also, her doctors said walking was the best post-chemo thing she could do. So, we took short walks together. I know your dad will be there for your mom, too, but primary caregiver breaks would be good.

I'm sorry your family is walking this road.

[Kassia]

2 hours ago, Dreamergal said:

No advice. Just hugs for you.

Take pictures and video, ask for recipes, make memories.

Will hold you and yours in prayers.

Yes, all of this from me too.  I'm very sorry.  

[Ottakee]

3 hours ago, lauraw4321 said:

I am a big fan of hospice - they were amazing with my grandfather. She's not ready to consider that currently, but I will be ready to move forward with that as soon as she is. 

We started Hospice a few days after my MIL was diagnosed with pancreatic cancer.  She was under their care for 9 months.   They helped with things like a hospital bed, lift chair, rails for the bed and bathroom, etc.   It allowed her to stay at home much longer.  We were so glad we did it sooner rather than waiting.  She even got some in home help, etc too.

Palliative care is also another option.

[Ditto]

I am heartbroken for your mom, you, and your family.  My deepest condolences. 

Edited May 11, 2021 by Ditto

[fairfarmhand]

One thing also...as your mom starts doing worse, if at all possible, pay people to do certain things. You and Dad are the only ones who can love mom as spouse and daughter. Other people can be paid to clean, food can be purchased, lawn care chores can be hired out. The emotional burden will be heavy and you need to realize that the work of loving a sick person and walking with them at the end of their journey is just as much work as actual chores. 

For certain care things, its often worth it to pay someone to come help with bathing and such because a trained person can do it so much more quickly and with less pain than an untrained but well intentioned family helper. 

[Jaybee]

I'm so sorry. I have kept scrolling past your post because it makes me think of losing my own mom. She isn't sick, but she is in her 90s.

I don't know how much this will apply to your situation, but reading so many of the answers makes me want to say along with @Faith-manor to be flexible. Try to hold loosely your expectations of things you want to accomplish or want her to do. She may not feel up to it, or may not feel the same sense of urgency due to her own personality, the effects of chemo, or the cancer's growth, and the plans may cause her distress. Same with expectations of how the illness will go, as far as timetables and how it will all play out. 

Hugs.

[lauraw4321]

21 minutes ago, Jaybee said:

I'm so sorry. I have kept scrolling past your post because it makes me think of losing my own mom. She isn't sick, but she is in her 90s.

I don't know how much this will apply to your situation, but reading so many of the answers makes me want to say along with @Faith-manor to be flexible. Try to hold loosely your expectations of things you want to accomplish or want her to do. She may not feel up to it, or may not feel the same sense of urgency due to her own personality, the effects of chemo, or the cancer's growth, and the plans may cause her distress. Same with expectations of how the illness will go, as far as timetables and how it will all play out. 

Hugs.

Thank you. I'm trying hard. I think she's going to want to fight fight fight even though chances of that fight gaining her much time are very small. I'd rather her accept and enjoy the time she has and not be sick with chemo for all of it. But I'm working really hard to keep my mouth shut and follow her lead. I'm just making gentle suggestions and trying not pushing anything. I'm not the one facing my death squarely in the face, and I need to keep reminding myself that. She relies on me for advice a lot. Always has. I've been the grown  up in our relationship a lot. I can't make these decisions for her, even though she may want me to. I took over with my grandparents because we'd had lots of conversations and I knew what their wishes were. My mom and I haven't. And now it's so fraught. With my grandparents we discussed their wishes before they were ill. But I've never had those conversations with my mom and it's not a hypothetical situation now. Maybe we'll find a way to have them soon.

[lauraw4321]

Hoping for more advice. I don’t think my mom is facing things realistically. Is it my place to say anything? They think she’s stage 3.  She wants to leave our trip early, even though nothing will happen sooner by leaving. She hasn’t had a great time and I think trying to convince her to stay is wrong. But do I talk to her about survivability?  I don’t know what (if anything) to do / say. 

[mommyoffive]

10 minutes ago, lauraw4321 said:

Hoping for more advice. I don’t think my mom is facing things realistically. Is it my place to say anything? They think she’s stage 3.  She wants to leave our trip early, even though nothing will happen sooner by leaving. She hasn’t had a great time and I think trying to convince her to stay is wrong. But do I talk to her about survivability?  I don’t know what (if anything) to do / say. 

I have no real world advice.   I think you should follow her lead.  If she wants to leave the trip, then I think she should.  Maybe she has to do things on her own timeline?  Maybe it is easier to see or think from the outside and she just isn't at that point yet.    I think the best thing you can do is just be her support.  Be there for her in the way that she wants and needs.  She is the one going through this and she has the right to do it the way that she wants even if it isn't what you want her to do.  

I am just sending hugs to you and prayers to your mom.

[fairfarmhand]

11 minutes ago, lauraw4321 said:

Hoping for more advice. I don’t think my mom is facing things realistically. Is it my place to say anything? They think she’s stage 3.  She wants to leave our trip early, even though nothing will happen sooner by leaving. She hasn’t had a great time and I think trying to convince her to stay is wrong. But do I talk to her about survivability?  I don’t know what (if anything) to do / say. 

It could be that she doesn't believe that anything will happen sooner by leaving early.

It could simply be that she's not in the mental space to go enjoy a trip right now. She's probably still emotionally processing all of this, and depending on how she's mentally wired, being around a lot of people in a strange place may not be what she mentally and emotionally can handle. 

She may or may not be able to even realize that about herself.  

Let HER talk to YOU. Just listen. And ask questions. Try not to advise or give suggestions. She's dealing with a lot.

If she wants to leave early, it is probably best to go home. Remember that this is her journey. Yes, you're on it with her since you're her daughter, but she gets to handle this how she needs to whether it's healthy or not.

[Pawz4me]

14 minutes ago, lauraw4321 said:

Hoping for more advice. I don’t think my mom is facing things realistically. Is it my place to say anything? They think she’s stage 3.  She wants to leave our trip early, even though nothing will happen sooner by leaving. She hasn’t had a great time and I think trying to convince her to stay is wrong. But do I talk to her about survivability?  I don’t know what (if anything) to do / say. 

I don't have any advice. I can tell you that my DH was diagnosed with stage IV cancer almost four years ago (about two more months until his cancerversary). He's still here and doing relatively okay. Good quality of life. Cancer treatment is so much better than what it was even just a few years ago. (With the caveat that of course I don't know anything about your mom's cancer or her overall health, etc.).

As @fairfarmhandjust said, I'd let her talk to you. Not the other way around. The only possible exception to that would be if you know ALL the details of her cancer and planned treatment and understand them.

[barnwife]

Losing a parent is so hard...I am sorry you are going through this. It's been almost 3 years since we lost my dad to pancreatic cancer. Others have given lots of good advice/thoughts. I want to address the part about your kids.

We had 4 kids under 8 when my dad passed. He battled for almost 2 years. We never hid the fact that he was sick from them. We used kid appropriate language. ("Grandpa went to the doctor because he wasn't feeling well. Grandpa's sickness is called pancreatic cancer. Our hearts hurt because there really aren't good treatments for it.") We answered any questions they asked. 

I think it would have been hard for me to hide my feelings from the kids. Also, they could tell Grandpa wasn't right almost as soon as he was diagnosed (due to curtailing of favorite activities). 

YMMV, but I'd think your kids might very well notice something is off. 

I hope you are all able to enjoy the trip. I will keep you in my thoughts and prayers.

[lauraw4321]

I listened. I told her I only wanted to make sure she didn’t make a rash decision she’d regret. I suggested getting her a scooter to stay and she didn’t want that. We hugged and cried and and I told them I loved them. My dad said sorry for being a burden. I told him that if he said that again I’d drop kick him off the balcony because they are my only parents and they will never be a burden. That was it. Thanks for letting me come process. We don’t know all the facts yet. PET scan is Monday. There are a lot of reasons I’m not optimistic, but I’m not God. Thanks again. 

[lauraw4321]

2 minutes ago, barnwife said:

Losing a parent is so hard...I am sorry you are going through this. It's been almost 3 years since we lost my dad to pancreatic cancer. Others have given lots of good advice/thoughts. I want to address the part about your kids.

We had 4 kids under 8 when my dad passed. He battled for almost 2 years. We never hid the fact that he was sick from them. We used kid appropriate language. ("Grandpa went to the doctor because he wasn't feeling well. Grandpa's sickness is called pancreatic cancer. Our hearts hurt because there really aren't good treatments for it.") We answered any questions they asked. 

I think it would have been hard for me to hide my feelings from the kids. Also, they could tell Grandpa wasn't right almost as soon as he was diagnosed (due to curtailing of favorite activities). 

YMMV, but I'd think your kids might very well notice something is off. 

I hope you are all able to enjoy the trip. I will keep you in my thoughts and prayers.

Thanks. She’s not in good health and my kids are very distracted by Disney and other family so I don’t think they know anything yet. But we will tell them as soon as We return. 

[TechWife]

Try to separate how you deal with your mother's illness from how she deals with her illness. It's not realistic to expect her to deal with it in the same manner you are dealing with it because you are not dealing with the same thing. You are having different experiences alongside each other, but not the same experience. It is a boundary that you literally can't cross. Trying to do so will likely cause unnecessary stress and grief for everyone.

Your mother is the one who gets to decide how much she wants to know, who she wants to hear it from, what treatments she pursues, if any and the timing of all of it. You can ask permission to accompany her on doctor visits, which would give you an opportunity to ask the doctor questions, but you need to take all of your cues from her. She's in the driver's seat. This does not mean that you can't have needed discussions about the boundaries of your own support when necessary, but the nature of those discussions can't be centered around whether or not she does/does not to something you want her to do in regards to her treatment. If she chooses a route that means that you are less available due to location, for example, then you will be honest with her about that and work out what you can, but don't attempt to change the route based upon your own boundaries. Instead, respect her journey, let her choose the route and join her whenever, where ever you are able.

Listening to her is the best thing to you can do for her.  Offer your support. Realize that her diagnosis is not the entirety of who she is.

Seek support for your own stress related to this from someone (many someone's, if possible) who is not your mother. You are having a different experience than she is, with different stressors.

When needed, tell your children that you are stressed due to Grandma's illness. Ask them for grace and allow them to give it in any capacity that they are able to do so. Remember that they are having yet another experience than you are - not just that of Grandma's illness, but of how your experience is impacting them. Due to human nature, they are much more likely to get upset at changing their schedule last minute than they are at the fact that you need to go somewhere on short or no  notice. Try as we may to keep our kid's schedules stable during emergencies, it isn't always possible, and that's okay. Recognize their reactions as legitimate, because they are, but realize that you are helping them to see how the priority really is Grandma's care, not their soccer game or the birthday party.

I am sorry you are having to deal with this. It is so hard to be intimately involved with something that is in no way under our control. It's a real exercise in humility and love. We don't talk about this often enough in our society.

[lauraw4321]

8 minutes ago, TechWife said:

Try to separate how you deal with your mother's illness from how she deals with her illness. It's not realistic to expect her to deal with it in the same manner you are dealing with it because you are not dealing with the same thing. You are having different experiences alongside each other, but not the same experience. It is a boundary that you literally can't cross. Trying to do so will likely cause unnecessary stress and grief for everyone.

Your mother is the one who gets to decide how much she wants to know, who she wants to hear it from, what treatments she pursues, if any and the timing of all of it. You can ask permission to accompany her on doctor visits, which would give you an opportunity to ask the doctor questions, but you need to take all of your cues from her. She's in the driver's seat. This does not mean that you can't have needed discussions about the boundaries of your own support when necessary, but the nature of those discussions can't be centered around whether or not she does/does not to something you want her to do in regards to her treatment. If she chooses a route that means that you are less available due to location, for example, then you will be honest with her about that and work out what you can, but don't attempt to change the route based upon your own boundaries. Instead, respect her journey, let her choose the route and join her whenever, where ever you are able.

Listening to her is the best thing to you can do for her.  Offer your support. Realize that her diagnosis is not the entirety of who she is.

Seek support for your own stress related to this from someone (many someone's, if possible) who is not your mother. You are having a different experience than she is, with different stressors.

When needed, tell your children that you are stressed due to Grandma's illness. Ask them for grace and allow them to give it in any capacity that they are able to do so. Remember that they are having yet another experience than you are - not just that of Grandma's illness, but of how your experience is impacting them. Due to human nature, they are much more likely to get upset at changing their schedule last minute than they are at the fact that you need to go somewhere on short or no  notice. Try as we may to keep our kid's schedules stable during emergencies, it isn't always possible, and that's okay. Recognize their reactions as legitimate, because they are, but realize that you are helping them to see how the priority really is Grandma's care, not their soccer game or the birthday party.

I am sorry you are having to deal with this. It is so hard to be intimately involved with something that is in no way under our control. It's a real exercise in humility and love. We don't talk about this often enough in our society.

Yes. Thank you. I need to hear this. 

[barnwife]

Also, think through what you want the very end to look like. That is, do you want to be there at the moment of death, if possible?

When we realized we were down to maybe a week with my dad, my sister took one last trip there. I also wanted to see him one more time, but needed to take the kids with me due to DH's work schedule/lack of that much childcare for 4 kids. My sister was amazed/concerned that I'd think about making that trip with kids. "What if he passes while you are there? What if they are in the room?"

I, OTOH, was shocked that she thought I wouldn't make one last trip. I just thought, if it happens while we are there, it happens. I'll tell my kids grandpa has gone to heaven (we are Catholic) and Grandma and I have some work to do, so go watch a movie. If she hadn't said anything, it wouldn't have occurred to me that some people would be uncomfortable with having their kids there. 

Anyway, going to visit one last time (yes, with the kids) still felt right, and so we went. And I am so grateful we did. I have a few very sweet memories from that trip. Yes, he did pass while we were there, although the kids were sleeping. 

Your kids are old enough that, if being there is a possibility, you might want to ask them how they feel. Again, I wish you peace as you navigate this very hard road.

[prairiewindmomma]

Being aggressively ill makes one feel a bit out of control at times. She may not be in a good head space for the trip and choosing to leave can both help her feel like she is in control and also moving forward in preparing for her PET scan. If she needs to go home and manage life there to help manage her feelings about her path, I would be supportive. This is her journey, and we all just get to be the support team, iykwim.

 

[YaelAldrich]

First of all big, gentle hugs for you and your families. Like others have said, your mom is the captain of the boat. The rest of you (family) can love her and care for her and support her. But the feelings and her actions are hers. I know when my sister was diagnosed with metastatic breast cancer I found her second and third opinions and gave her support, meals, rides, and whatever else I could do that she wanted. That's all I could do for her. I couldn't change the situation. What I could do was to try to make her life happier and lighter.  

Now that I'm on this journey with both my parents (we've got the cancer jackpot), I feel even more that this is my job. The doctors do speak to me with my parents' permission. But when they ask me if I am charge of making the decisions, I emphatically say they are in charge, even if I don't agree with their decisions.

Here are some more hugs. It's not easy.

[Harriet Vane]

One further thought:

When I faced the two toughest experiences of my adult life (ICU stay for life-threatening infection; sudden loss of a foster child who had been with us for years and who we hoped to adopt), I was hideously uncomfortable away from my own home. I just wanted to be home with only dh and my kids. Perhaps your mom is going through similar feelings? 

[Faith-manor]

My real world advice is to have a hospital social worker together with an educator nurse (a nurse on staff that is one often assigned to help the patient understand his/her disease) talk about survivability and possible outcomes, and be in the room with her asking questions.

Some patients really get it. Some are fuzzy and overwhelmed but get it later when it has a chance to sink in or after asking their relative/friend who went with them some questions. Some refuse to accept it. Those patients are the really tough ones.

My father was the blast kind. All I can tell you is that A. if your mom wants to leave vacation early, let her do it. Her mind and body are under assault, and she probably feels overwhelmed but may not want to say it. Support that. Get behind that. No judgement. B. If she does not accept that she is stage 3 and everything that entails, you can't do a thing about it. You will have to come to peace with her making decisions you think are bad. C. Begin thinking now about how much physical care it is reasonable for you to provide if she becomes terminal, and do NOT over extend yourself because if you do, you will crash and hurt your own health, something you might not recover from right away or maybe not ever! Ask me how I know. D. If she will not discuss the future and planning for possible outcomes, then just keep telling her medical care providers this. Sometimes patients do better listening to hospital advocates and social workers. Hopefully she will not be like my father who made everything a million times worse for himself AND for all of us by not listening to anyone to the very end. I really hope you do not end up in that position. But, I also refuse to sugarcoat it. 

Make sure throughout the process that you have some time each day to quietly process your thoughts and new information as it comes.

[hippymamato3]

I'm sorry. I didn't understand how many pre-existing conditions she had. I wish you both peace as you navigate this difficult time. 

Edited May 21, 2021 by hippymamato3

[lauraw4321]

On 5/20/2021 at 4:08 PM, hippymamato3 said:

Deleted. 

Edited May 21, 2021 by lauraw4321

[East Coast Sue]

Unfortunately, I can relate to a lot of your situation. My mom was so strong willed and determined that she'd "be fine" even with Stage 4, terminal lung cancer that she had the doctor's delaying their referral for her hospice care.  Literally, on a Friday morning I begged them to make the hospice referral or at least read the writing on the wall and send a social worker to talk to my mom about her prognosis- but they felt she had weeks or maybe months- she died very early that Sunday morning.  In the end, it was very hard on everyone involved. I recommend following your mom's lead but also have a social worker and doctor be very clear about options for hospice care (when it's appropriate).  Having read the book, Being Mortal, I can recommend being early rather than late with planning for end of life care.  It is possible to have great compassion and some comfort at the end of life but many, many times it is all sacrificed on the alter of experimental treatments and cures that aren't realistic.  That is an awful & traumatic ending for anyone that has suffered through it.

(((hugs))), and more (((hugs)))

[Halftime Hope]

On 5/12/2021 at 11:11 AM, lauraw4321 said:

Thank you. I'm trying hard. I think she's going to want to fight fight fight even though chances of that fight gaining her much time are very small. I'd rather her accept and enjoy the time she has and not be sick with chemo for all of it. But I'm working really hard to keep my mouth shut and follow her lead. I'm just making gentle suggestions and trying not pushing anything. I'm not the one facing my death squarely in the face, and I need to keep reminding myself that. She relies on me for advice a lot. Always has. I've been the grown  up in our relationship a lot. I can't make these decisions for her, even though she may want me to. I took over with my grandparents because we'd had lots of conversations and I knew what their wishes were. My mom and I haven't. And now it's so fraught. With my grandparents we discussed their wishes before they were ill. But I've never had those conversations with my mom and it's not a hypothetical situation now. Maybe we'll find a way to have them soon.

I'll chime in here a bit and take what I'm going to say with a grain of salt...it may or may not be helpful.   

My mom was 84, healthy, and was diagnosed with breast cancer in February, and then pancreatic cancer in April, right after having a lumpectomy and deciding she didn't want chemo or radiation for the breast cancer. The pancreatic cancer was deemed inoperable and untreatable, but she had abdominal surgery to move things around internally to keep her comfortable longer.  About a month after the surgery when she was well enough to be home, she started thinking about what she wanted to do, and being the "alternative medicine" person that she and dad had always been, she decided she wanted to go to Mexico for treatment. She and Dad could not have gone by themselves, and neither my brother and I were in an "easy" place to go with them and stay during treatment. I told her I would not consent to taking her until I had done some research on treatments and recovery rates for advanced pancreatic cancer, and until I had talked to the clinic doctors myself. My research took some time, a week or so, and I found a clinic in NY that seemed to have a very good protocol with quantifiable recovery rates, but by then she had lost her will to fight -- the protocol (diet and meds) was mentally overwhelming for her. She was back to her old normal, non-agitated self, pleasant to be around again, but she had resigned herself to living well and not fighting the cancer.  That's fine in some cases, but it was definitely her Plan B, not her Plan A. 

To this day I regret not having shelved my own fears and my own inflexible sense of family priorities to fight alongside my mom if that's what she wanted. I cannot imagine how that felt to her, to know that her daughter wouldn't help her try unless there was a good chance it would be successful.  

I'm grateful that she lived very well for another 7-8 months, and that we had a wonderful Christmas together as a family. But I'd do it differently if I had the chance. 

So my encouragement is to slow down, find out what your mom really wants, and to the best of your ability in the context of all your family needs, help her accomplish that.  

 

 

[lauraw4321]

After I recommended a scooter (and her refusing) she showed up at the park with a scooter. 🙂 She was able to do so much more with the kids. They did leave but they got to do a lot more with them yesterday than they had any other day. She seemed happier than I’ve seen her in awhile. 

[BusyMom5]

Hugs for your family- I am so glad your kids will have these memories.   

[Janeway]

I am so incredibly sorry!!! All I can say for preparing is to say all you want to say and listen to her. And if you can, try to video tape her or tape her. Ask her questions about everything from what Christmases were like when she grew up to...anything, school, summers, etc. Hug a lot and love a lot. Then, when she dies, you will miss her, but you won't have regrets. 

[Janeway]

Just now, Janeway said:

I am so incredibly sorry!!! All I can say for preparing is to say all you want to say and listen to her. And if you can, try to video tape her or tape her. Ask her questions about everything from what Christmases were like when she grew up to...anything, school, summers, etc. Hug a lot and love a lot. Then, when she dies, you will miss her, but you won't have regrets. 

I forgot to say, tell her what an amazing mother she was and how lucky you were to have her. Do not tell her anything negative, which I am sure you already know this. Like don't tell her how you still remember the time she spanked you or something. Get everything out that you want to get out so she knows you love her so much. 

[PeterPan]

I hope you're having a lovely time at Disney and making great memories. I lost both my inlaws over the last few years, and one of the things I realized each time in hindsight was that you make a funeral slideshow AFTER they're going instead of BEFORE when they could have actually enjoyed it. So I made a slideshow of my dad's photos a year or two ago (he's 70 now) and he LOVES it. 

If the pictures are not scanned, that would be something peaceful you could do together. Scan, talk about the pictures, then use Animoto and make a lovely video.  https://animoto.com/  They make it easy and if you wait until you have the pictures scanned and then pay the fee for a month, it's not too bad. I'll link the one I made for my dad. He's declining, and when he passes I may or may not add a few pictures at the end to update it. I think you could do the same.

Fwiw, going through the pictures might help you to work through the issues nagging at you. Sometimes when we see the pics and where they were coming from, we see things differently, with more context and our adult eyes.

 

Edited May 21, 2021 by PeterPan