Mom's Care

[TexasProud]

Ok, help me think through this. I need a sounding board. Mom was diagnosed in September with Stage 4 metastatic breast cancer, though it is not in her breasts. She has a 6cm tumor in her liver with several other spots. It is in practically every bone in her body. Despite this, her bloodwork was almost perfect when all of this started. She has been getting mammograms and yearly checkups, so this was a surprise. The biggest surprise was her cognitive decline. She just couldn't seem to keep all the medical information straight.  Add to this she is married to a wonderful man, but he had a stroke 20 years ago that left one side of his body permanently damaged. He does drive. His cognitive processes have gone way down and mom was the one keeping him on the straight and narrow. He still drives. I feel fine for him to go to local restaurants/grocery store, etc. Mom used to drive most of the time, but no longer drives. He is great at routines. He always cleans the kitchen after meals. Laundry day is Monday.  They have a housecleaner who comes twice a month, which is plenty because their house is immaculate.  It is a small one story house that they have lived in for over 30 years. They have some good couple friends that they have had for at least 30 years and they travel with often ( or did).  These friends have faithfully been visiting them, bringing food, taking her to get her haircut, etc.  I live 2 1/2 hours away. My sister lives 18 hours away now.

She has been losing a ton of weight, so that made her diabetic medicine and blood pressure medicine too strong. She ended up in the ER with her blood sugar at 40. I took her to the internal medicine doc and things are adjusted now. But she had been forgetting to take medicine.  The IBRANCE made her white blood counts dangerously low, but they adjusted the dose, so that is better. 

I have home health nurse coming in once a week to fill her pill box. I have been going down for several days each week. My sister was there for a week in October and is there this week. My Aunt sometimes comes. She will be there over Christmas. When they are not there, I have a caregiver coming for 2 hours every day to make sure she took her morning meds and to make sure they have a decent lunch, though many times my step-father is still going out and bringing in fast food.

Her treatment has shrunk some of the tumors and is confusing them. According to the doctor, at some point, this treatment will stop working and they will go to a different one, which will work for a shorter amount of time. 

In the last week, her cognitive skills have returned to pre-cancer levels. Of course she is still doesn't have much of an apatite and doesn't have much energy, though more than she did when first diagnosed. But basically her daily schedule is this: gets up at 7ish.  Drinks coffee. Reads on her ipad. If she feels really good, she turns on MSNBC. She often fixes herself breakfast at 8ish and then takes her blood pressure, glucose and her meds ( though not her blood pressure or glucose if it is under 100). At 9:30 she often goes down for a nap. Gets up for lunch. Sits in her chair with her ipad or MSNBC.  Sometimes a friend will come over in the afternoon.  She eats dinner at 4:30/5 and both are in bed by 6. My step-dad spends hours playing some kind of bubble popping game on his ipad.

Mom is feeling good enough, she doesn't feel like the care givers are necessary. IF my step-dad was capable of recognizing mom isn't doing well or making her take his meds ( she has to make him take his) that would be one thing. But he isn't. She doesn't have things for them to do. I want eyes on the ground if that makes sense when I am not there.  But they really are not doing much at the present time. She did help my step-dad put up the Christmas tree. 

I am stuck as I do not know how to plan. Someone must be with her at the doctor's appointments as she doesn't always understand what they say. I always type things out.  She has done very well with her meds now that they are adjusted and I have typed out exactly what to do.  I want to keep them in their home. It is completely safe. They have friends whereas they know no one here. Plus, I wouldn't want my step-dad to drive on our rural roads. He would get lost. He knows the town he has lived in now for over 50 years. He may not know the name of his doctor, but he knows exactly how to get there.  Mom has long-term care insurance, but she doesn't qualify for it right now. 

I just feel in limbo. I have one more semester of school to keep me busy.  I was supposed to be serving in Africa this month.  I have no idea what to commit to. I have no idea what to plan for. I FINALLY got them to put me on their checking account. We have some other forms I am still trying to get them to sign. My husband wants us to keep the caregivers because they are good and we don't want them to be snatched away and then we have no one when mom needs more care.  I would like not to have to go every single week if possible, which now that things are stable, is possible as doctor appointments are being moved to every two weeks.  All the plans I had thought I had made won't work with mom's health.

I am also trying to persuade mom, and she agrees that my step-dad needs a check-up. Hoping to talk to his doctor and get him to do cognitive tests and refer him for home health and pt, so the nurse that comes once a week for mom can help him as well. 

Do I tell mom she needs to keep the caregivers. Is there some other kind of person I am looking for. I just want to make sure she is taking her meds and is eating. 

Then Covid.  The Covid precautions for all of this are exhausting as well. Am I missing something to make this easier?

[Faith-manor]

When my grandma went through something similar, my parents were able to hire a retired neighbor to do a lot of things like this. Keep the caregivers. Her condition could take a turn, and you want already trained people for her.

[Mrs Tiggywinkle]

You need to keep the caregivers and plan for her lowest level of cognitive function.  You don’t know what days she’ll be good and what days she won’t.  Even if they don’t like having caregivers, it will give you peace of mind and they’ll be there when she needs them.  Honestly with as scarce as nursing home beds and in home caregivers are right now, I’d be treating them like gold.

And you also don’t need to pause your life to care for your mom.  Hire good people, stop by, check in often, but your life and dreams are important too.

[TechWife]

Since your mom’s cognitive state is currently good, I recommend sharing your concerns with her and getting her feedback. I’d be especially sure to talk about how you aren’t sure that your dad will recognize it if she declines again. Maybe you can come up with some type of compromise plan. Having the caregiver come 3 days a week instead of daily, still having an RN fill her pill box, making sure you go to medical appointments, for example. I’d also have both of them sign releases with all of their medical providers so their providers can call you directly if they want to make sure you are aware of a change. This also gives you the ability to call the providers and talk to them as well. 

[TexasProud]

4 minutes ago, Mrs Tiggywinkle said:

You need to keep the caregivers and plan for her lowest level of cognitive function.  You don’t know what days she’ll be good and what days she won’t.  Even if they don’t like having caregivers, it will give you peace of mind and they’ll be there when she needs them.  Honestly with as scarce as nursing home beds and in home caregivers are right now, I’d be treating them like gold.

And you also don’t need to pause your life to care for your mom.  Hire good people, stop by, check in often, but your life and dreams are important too.

Thank you. I cannot just stop by. It takes 2 1/2 hours -3 hours to get there depending on how bad I 20 is .  I cannot commit to going on a mission trip or a writing conference or traveling. 

[JennyD]

11 minutes ago, Mrs Tiggywinkle said:

You need to keep the caregivers and plan for her lowest level of cognitive function.  You don’t know what days she’ll be good and what days she won’t.  Even if they don’t like having caregivers, it will give you peace of mind and they’ll be there when she needs them.  Honestly with as scarce as nursing home beds and in home caregivers are right now, I’d be treating them like gold.

I agree wholeheartedly with this.

 

[TexasProud]

6 minutes ago, TechWife said:

Since your mom’s cognitive state is currently good, I recommend sharing your concerns with her and getting her feedback. I’d be especially sure to talk about how you aren’t sure that your dad will recognize it if she declines again. Maybe you can come up with some type of compromise plan. Having the caregiver come 3 days a week instead of daily, still having an RN fill her pill box, making sure you go to medical appointments, for example. I’d also have both of them sign releases with all of their medical providers so their providers can call you directly if they want to make sure you are aware of a change. This also gives you the ability to call the providers and talk to them as well. 

We have had this conversations MULTIPLE times whenever her cognitive state is good. She knows my step-dad ( They married after my husband and I did, though that was 31 years ago. He is a nice guy, but not my dad.) can't do it, but doesn't want to admit it. Mom has signed the releases with all of her doctors, home health, etc a long time ago. They have to communicate with me to schedule things because my step-dad will just answer the phone and say, sure that sounds good, but it doesn't get written down and so no one knows about the appointments. So home health, pt, etc. all know to call me. I am hoping to get that same power with my step-dad's doc. Who knows when the last time he went to the doctor. I talk to mom's oncology nurse at least weekly. She is AMAZING.

But mom will not sign new medical or durable power of attorney papers to make me the primary instead of my step-dad. I have asked and asked and have the papers drawn up. She knows he can't handle stuff, but doesn't want to hurt him and he can do some things. 

[Kanin]

I have no idea, and want to say I’m sorry you’re all going through this.

You might want to look into a free app called Abridge. It transcribes the audio of appointments for you, so you just record during the appointment. I’ve not used it myself but I hear it’s really amazing. 

 

https://www.abridge.com

[TexasProud]

5 minutes ago, Kanin said:

I have no idea, and want to say I’m sorry you’re all going through this.

You might want to look into a free app called Abridge. It transcribes the audio of appointments for you, so you just record during the appointment. I’ve not used it myself but I hear it’s really amazing. 

 

https://www.abridge.com

Thank you!!!!

[TexasProud]

That is the other thing. Neither one will use cell phones. So both times they have gone to the ER, I have had to call around when they haven’t answered the landline after a few hours. Maddening. 

[katilac]

I would definitely keep the caregivers as is. Maybe your mom would buy into the explanation that it's better to keep them, bc it's so hard to find good ones and you don't want to lose them (which is 100% true).  

1 hour ago, Mrs Tiggywinkle said:

 And you also don’t need to pause your life to care for your mom.  Hire good people, stop by, check in often, but your life and dreams are important too.

I agree that the OP's life and dreams are important as well, but I also think it's pretty reasonable to pause certain things when you aren't that likely to have a long time with a loved one. For me, that would look like canceling things like mission trips, because mom would be my mission. While you can never know exactly what will happen, I'd take reasonable predictions into account when planning things like travel and conferences. Buy trip insurance and stay in the country. 

5 minutes ago, TexasProud said:

That is the other thing. Neither one will use cell phones. So both times they have gone to the ER, I have had to call around when they haven’t answered the landline after a few hours. Maddening. 

Wow, that is maddening. Is the ER not offering to call people for them? Maybe they don't because they are both there, and presumably the spouse could call? If you haven't done so, make sure they understand that the ER will make a call for them. Or would they carry one of those super-simple phones that would make it easy for them to speed dial you or your sis? 

You are not missing much of anything that would make this easier. It's really hard and exhausting no matter what. Keeping the caregivers in place will make things easier in the long run. I agree with not moving them from their home, unless that is their desire. 

I find it easier to make fewer trips for a longer period of time, so maybe you can work on some kind of schedule. I can't recall how old your kids are, and that will definitely affect the plans. Try to work with your sister to plan times when each of you are 'off duty' and the other ones is handling things and not calling to discuss things for those specific days (except in case of emergency, of course). 

It's great that they have some friends who visit and help out!

[Melissa in Australia]

Hugs

[TexasProud]

4 minutes ago, katilac said:

 

I find it easier to make fewer trips for a longer period of time, so maybe you can work on some kind of schedule. I can't recall how old your kids are, and that will definitely affect the plans. Try to work with your sister to plan times when each of you are 'off duty' and the other ones is handling things and not calling to discuss things for those specific days (except in case of emergency, of course). 

 

I am an empty nester. My husband will be gone January and February, so I mean I could technically stay there most of the time if I wanted to. That is part of what is frustrating. I took care of my dad for 5 years WHILE raising my children and taking care of a burned out husband. I took care of my husband's grandmother with older children and a husband still struggling. I homeschooled the children and sacrificed myself for them.  I finally had a job and then this great opportunity with school that I loved. Now seminary is just check these last 5 hours and be done, which makes me really mad. This was supposed to be my time to pursue what I want and not have to take care of anyone now that the kids are gone.  Selfish, I know, but this is my third time to do this and I am tired.

[Mrs Tiggywinkle]

4 minutes ago, TexasProud said:

I am an empty nester. My husband will be gone January and February, so I mean I could technically stay there most of the time if I wanted to. That is part of what is frustrating. I took care of my dad for 5 years WHILE raising my children and taking care of a burned out husband. I took care of my husband's grandmother with older children and a husband still struggling. I homeschooled the children and sacrificed myself for them.  I finally had a job and then this great opportunity with school that I loved. Now seminary is just check these last 5 hours and be done, which makes me really mad. This was supposed to be my time to pursue what I want and not have to take care of anyone now that the kids are gone.  Selfish, I know, but this is my third time to do this and I am tired.

This is why I think you should rely on caregivers. You do not have to do all of this by yourself.  Obviously I would not go on a two month out of country mission trip, but you could finish your seminary degree.  It’s balance, and I know your heart is a caregiving heart, but you have to care for yourself too.  Especially since your mother is not actively dying or has a poor prognosis at this point, and this could be a semi-long-term situation.

[katilac]

10 minutes ago, TexasProud said:

 Selfish, I know, but this is my third time to do this and I am tired.

That is completely understandable. 

[Scarlett]

Definitely keep the caregivers and to echo another post treat them like gold.  If your mom balks one thing you could tell her is that they are good caregivers and they need jobs so she is helping the caregivers too.  
 

 

[Ottakee]

It is too early for it now, but if she gets to the point where there is no more treatment options, I highly suggest Hospice care as soon as she qualifies.  I did that with my late MIL and it was a huge help with meds, monitoring, a home helper, etc.

[TexasProud]

15 minutes ago, Mrs Tiggywinkle said:

  Obviously I would not go on a two month out of country mission trip, but you could finish your seminary degree.  It’s balance, and I know your heart is a caregiving heart, but you have to care 

Oh I will finish it. But it makes me mad, though it shouldn't, I guess. When I started, it was magical. I spent the day going to class and interacting with really smart people. I was part of a women's group of wonderful ladies also going to seminary. I would then spend the night with my mom, having a great visit. I would get up early and drive back to campus for more wonderful classes, then drove home. I was so incredibly happy.  I discovered I had a talent for writing. I got quite a few things published. That lasted for a semester and a half and then Covid. I am back at my house, doing virtual stuff with all three kids at home.  Covid starts to look good this past summer. Maybe I can do classes in person again. Then Delta,  now my mom. It was so hard trying to get all of my work done while in waiting rooms or at home.  My brain is in a fog from going back and forth. Now classes are just something to check off the list. Rather than actually enjoying them, I am just trying to survive. Not he reason I went. I have two more media worship classes left. That it. Fun classes, but I probably won't have fun now and I pray I have the creativity amidst all of this to do them well. Not sure I do. This was supposed to be for me to enjoy. Selfish. I know. Millions of people have died.  My mom is dying.  And I am whining about not being able to enjoy school.  

[TexasProud]

4 minutes ago, Scarlett said:

Definitely keep the caregivers and to echo another post treat them like gold.  If your mom balks one thing you could tell her is that they are good caregivers and they need jobs so she is helping the caregivers too.  
 

 

That might work.

[regentrude]

3 minutes ago, TexasProud said:

Oh I will finish it. But it makes me mad, though it shouldn't, I guess. When I started, it was magical. I spent the day going to class and interacting with really smart people. I was part of a women's group of wonderful ladies also going to seminary. I would then spend the night with my mom, having a great visit. I would get up early and drive back to campus for more wonderful classes, then drove home. I was so incredibly happy.  I discovered I had a talent for writing. I got quite a few things published. That lasted for a semester and a half and then Covid. I am back at my house, doing virtual stuff with all three kids at home.  Covid starts to look good this past summer. Maybe I can do classes in person again. Then Delta,  now my mom. It was so hard trying to get all of my work done while in waiting rooms or at home.  My brain is in a fog from going back and forth. Now classes are just something to check off the list. Rather than actually enjoying them, I am just trying to survive. Not he reason I went. I have two more media worship classes left. That it. Fun classes, but I probably won't have fun now and I pray I have the creativity amidst all of this to do them well. Not sure I do. This was supposed to be for me to enjoy. Selfish. I know. Millions of people have died.  My mom is dying.  And I am whining about not being able to enjoy school.  

Can you take a break from school and finish when things are better?

[Scarlett]

10 minutes ago, TexasProud said:

Oh I will finish it. But it makes me mad, though it shouldn't, I guess. When I started, it was magical. I spent the day going to class and interacting with really smart people. I was part of a women's group of wonderful ladies also going to seminary. I would then spend the night with my mom, having a great visit. I would get up early and drive back to campus for more wonderful classes, then drove home. I was so incredibly happy.  I discovered I had a talent for writing. I got quite a few things published. That lasted for a semester and a half and then Covid. I am back at my house, doing virtual stuff with all three kids at home.  Covid starts to look good this past summer. Maybe I can do classes in person again. Then Delta,  now my mom. It was so hard trying to get all of my work done while in waiting rooms or at home.  My brain is in a fog from going back and forth. Now classes are just something to check off the list. Rather than actually enjoying them, I am just trying to survive. Not he reason I went. I have two more media worship classes left. That it. Fun classes, but I probably won't have fun now and I pray I have the creativity amidst all of this to do them well. Not sure I do. This was supposed to be for me to enjoy. Selfish. I know. Millions of people have died.  My mom is dying.  And I am whining about not being able to enjoy school.  

Well, I mean, no one is forcing you to help care for your mom.  If you don’t want to do it don’t do it,  

[TexasProud]

5 minutes ago, regentrude said:

Can you take a break from school and finish when things are better?

My husband doesn't think that is a good idea. Partially because as soon as I graduate we will be leading more mission trips and/or serving overseas. He has been putting stuff off so I can finish. Of course with mom, who knows. Covid has screwed all that up. But he has to do the surgical stuff and right now he is gone 2 months at a time. I am ready to go with him. 

[melmichigan]

17 minutes ago, Scarlett said:

Definitely keep the caregivers and to echo another post treat them like gold.  If your mom balks one thing you could tell her is that they are good caregivers and they need jobs so she is helping the caregivers too.  
 

 

I agree with everyone else, keep the caregivers.  My MIL owns a home care agency, they cannot get people and cannot take any new cases at this point.  You don't want to loose them.

[TexasProud]

4 minutes ago, Scarlett said:

Well, I mean, no one is forcing you to help care for your mom.  If you don’t want to do it don’t do it,  

Oh my goodness, what kind of monster would not take care of their mom.  I absolutely must. I am just so weary of being responsible. If I choose wrongly, she could die. It would be my fault. I worry about my step-dad driving. I worry about what happens if I am not there.  I cannot imagine walking away from my mom. 

[TexasProud]

Thank you .  Ok Hive and my husband are unanimous. Keep the caregivers.  Hopefully, my mom will agree.

[Starr]

Seriously, keep good caregivers. I can't stress this enough. 

[HS Mom in NC]

33 minutes ago, TexasProud said:

Oh my goodness, what kind of monster would not take care of their mom.  I absolutely must. I am just so weary of being responsible. If I choose wrongly, she could die. It would be my fault. I worry about my step-dad driving. I worry about what happens if I am not there.  I cannot imagine walking away from my mom. 

No one is suggesting you walk away from your mom.  They're talking about hiring hands on, qualified care so you don't have to do all or some of it yourself.

Today's eldercare is NOTHING like it was generations ago.  People do the long slow dwindle now because we can buy more time for fragile, limited elders with interventions we didn't have back then.  Back then people got cancer and died quickly because there weren't treatment options.  People got high blood pressure and had massive stokes and died quickly because there wasn't a treatment option.  And heart blockages. And bad kidneys.  And on and on.

Back then they had more children on average usually living close to share elder caregiving.  Now adult children often live away from their extended family members and have few siblings.  That has pros and it has cons.  It's usually a con for eldercare. And empty nesting women didn't get into international ministry and college classes.  They stayed home, helped care for elder and grandchildren because people married in their 20s and had babies.

All that is a relic of the past.  Because everything has changed, everything has to change.  Now skilled caregiving is necessary for long periods of time for people who choose medical intervention and preventive care.  Either you can do that yourself and put aside other things, or you can hire people to do if for you.  Which do you want to do?  How much? It could go on for weeks, months, or even years.  The amount of care the elder needs will increase-either slowly and steadily or suddenly or one then the other. 

No, you can't plan anything until they die. You've said you don't want to do it all on your own.  That's perfectly reasonable, but be realistic.You can only choose from options that: 

1. That you know about.
2. That exist. (No idealism, only realism.)
3. That you have access to.

We are in the midst of a nursing and CNA shortage along with COVID issues.  Hire everything you can and decide how you and your adult sibling(s) will deal with it if you can't hire what you want.

[Tree Frog]

2 hours ago, katilac said:

I find it easier to make fewer trips for a longer period of time, so maybe you can work on some kind of schedule.

You can also get a better idea of functioning if you're there for a longer period of time. It's easy to hold things together for a day or two so company doesn't see how things are breaking down, but someone who's there for a week or so is likely to have a more accurate idea of how things are going.

[Harriet Vane]

3 hours ago, Mrs Tiggywinkle said:

You need to keep the caregivers and plan for her lowest level of cognitive function.  You don’t know what days she’ll be good and what days she won’t.  Even if they don’t like having caregivers, it will give you peace of mind and they’ll be there when she needs them.  Honestly with as scarce as nursing home beds and in home caregivers are right now, I’d be treating them like gold.

Yes, this. Do not let go of good caregivers, especially when you know they are aging and there will be continued decline due to cancer and health. I would draw a line in the sand and make a Big Deal about keeping the caregivers.

[mom31257]

I'm glad you are keeping the caregivers.

We found out about my mom's illness when it was stage 4 as well. It was 5 months later that she passed away. It was a very busy time with my kids, and I wish we had put more things on hold. My dad and older sister were doing a lot for her, but I wish we had taken even more time to visit than we did. You can't get the time back once they are gone. 

[TechWife]

3 hours ago, katilac said:

 

Wow, that is maddening. Is the ER not offering to call people for them? Maybe they don't because they are both there, and presumably the spouse could call? If you haven't done so, make sure they understand that the ER will make a call for them. Or would they carry one of those super-simple phones that would make it easy for them to speed dial you or your sis? 

 

An ED will not call someone without the patients’ permission. They can and do offer to call family, but when a competent patient or family member/next of kin, declines, they won’t make the call. This is as it should be. 
 

ETA: in emergency situations where immediate attention of family is needed, they will call for people that are non-responsive if they have the information they need to do so. They don’t call people from the ED just to let them know what is happening. 

Edited December 14, 2021 by TechWife

[readinmom]

Yep, keep the caregivers.  Sometimes others in the family fail to recognize the needs of the person in need.  The caregivers have experience, know what is needed in your mom's case.  We sometimes have blinders on, can't see things for what they actually are.  I am so sorry for this experience...cancer has no rhyme or reason for the way it destroys us.  

[TechWife]

I know I sound like the odd one here somewhat, but this is my experience talking. 

Do everything you can to preserve her dignity. This means including her in these decisions when she is competent and taking her input into consideration. 

Consider finances because money doesn’t last nearly as long as we think it should when it comes to medical care and elder care in general. Money spent on care that isn’t needed won’t be available later when the care is needed. Choose carefully.

It is sometimes necessary to pay for care for peace of mind. 

Advocate. You sound like you are already doing this, keep it up. It gets exhausting. 
 

 

[katilac]

9 minutes ago, TechWife said:

An ED will not call someone without the patients’ permission. They can and do offer to call family, but when a competent patient or family member/next of kin, declines, they won’t make the call. This is as it should be. 
 

ETA: in emergency situations where immediate attention of family is needed, they will call for people that are non-responsive if they have the information they need to do so. They don’t call people from the ED just to let them know what is happening. 

Of course they won't call if permission is refused; I asked if they were offering to call. 

My parents do carry cell phones, but the EDs around here have always been great about offering to make calls for them anyway. 

[TechWife]

4 hours ago, Mrs Tiggywinkle said:

And you also don’t need to pause your life to care for your mom.  Hire good people, stop by, check in often, but your life and dreams are important too.

I agree that the OP’s life & dreams are important. However, there are times in all of our lives we have to put our life on hold in order to care for others. Look for ways to keep optional personal activities happen, but realize we can’t do everything we want to do. It isn’t always easy to put dreams on hold, but it is often necessary. Caring for elderly parents is right up there in importance with caring for a newborn baby. The needs do outweigh our desires at times. It sounds harsh, but blanket statements can sometime lead to unrealistic expectations. We cannot “have it all” and we do ourselves a disservice to think we can. Life just doesn’t work that way. 

[TechWife]

3 minutes ago, katilac said:

Of course they won't call if permission is refused; I asked if they were offering to call. 

My parents do carry cell phones, but the EDs around here have always been great about offering to make calls for them anyway. 

I should have been more clear. My point is simply that there isn’t any way for any of us to definitively know the answer to this question.  

[katilac]

Just now, TechWife said:

I should have been more clear. My point is simply that there isn’t any way for any of us to definitively know the answer to this question.  

Oh yeah, for sure, but I would at least make sure they know that they can ask. If the nurses weren't really friendly and proactive about offering, my mom would be one who would never think of asking. 

[TechWife]

3 hours ago, TexasProud said:

I am an empty nester. My husband will be gone January and February, so I mean I could technically stay there most of the time if I wanted to. That is part of what is frustrating. I took care of my dad for 5 years WHILE raising my children and taking care of a burned out husband. I took care of my husband's grandmother with older children and a husband still struggling. I homeschooled the children and sacrificed myself for them.  I finally had a job and then this great opportunity with school that I loved. Now seminary is just check these last 5 hours and be done, which makes me really mad. This was supposed to be my time to pursue what I want and not have to take care of anyone now that the kids are gone.  Selfish, I know, but this is my third time to do this and I am tired.

Having read this far now, I’ll change course on my recommendations. You need to get all the help you can. You sound overwhelmed because you know what’s in front of you. It is overwhelming. If your mom can afford caregivers, keep them on. Tell your mom that they are there more for you than her if you want to. It’s reasonable to have help when you need it and you already sound like you need to take deliberate steps to pace yourself. As you know, it’s a marathon, not a sprint. I’d give you a hug if I could. 

[Laura Corin]

A side note - the forms you mention,  do they include power of attorney?  Here POA can include making medical decisions as well as financial. That may become crucial.

[TexasProud]

1 hour ago, Laura Corin said:

A side note - the forms you mention,  do they include power of attorney?  Here POA can include making medical decisions as well as financial. That may become crucial.

She won’t change them from it being my stepdad first and he won’t change from it being my mom first to my stepbrother.  They are very devoted to each other.  Forms are drawn up, but they do not believe they are needed. 

 

My stepdad is planning trips and looking for RV vans for them to take trips when this “blip” is over.  He does not understand the severity despite being in the room when the doctor says there is no cure and mom has a new baseline.  Mom keeps waiting to do things when she feels better, but she is never going to feel “normal” again.  Well, I guess I do not know that for sure and I don’t want to take away hope. But plans need to be made for eventualities. Mom is 78 and he is 70. 

[TexasProud]

7 hours ago, katilac said:

Oh yeah, for sure, but I would at least make sure they know that they can ask. If the nurses weren't really friendly and proactive about offering, my mom would be one who would never think of asking. 

The problem is mom is typically out of it and my stepdad doesnt know phone numbers(Yes, in big letters in purse) To be honest, I am not sure he knows how to work the phone.  When asked, he would say ok. My mom will call when she is better. 

That is what he does when home health calls or anyone calls. He agrees to the time, but doesn’t write it anywhere. 

[TexasProud]

7 hours ago, TechWife said:

I agree that the OP’s life & dreams are important. However, there are times in all of our lives we have to put our life on hold in order to care for others. Look for ways to keep optional personal activities happen, but realize we can’t do everything we want to do. It isn’t always easy to put dreams on hold, but it is often necessary. Caring for elderly parents is right up there in importance with caring for a newborn baby. The needs do outweigh our desires at times. It sounds harsh, but blanket statements can sometime lead to unrealistic expectations. We cannot “have it all” and we do ourselves a disservice to think we can. Life just doesn’t work that way. 

I know that. Cared for my dad from 2005-2009, my husband’s grandmother 2009-2012(and along with my dad) My husband 2014-15. All the while homeschooling the 3 kids. That is when I fell into my depression. What got me out was actually getting out of the house and getting a job in 2016. Only daughter was left at home. Figured out what I wanted to do and taught school and went to seminary 2018-2019. Then only seminary in 2019 and looking forward to empty nest in 2020 when I only had to take care of myself and instead my house is full again. Though it WAS different.  But yeah. If this plays out the way I think it will, I will be 60 before I am not taking care of someone. And my husband could have a relapse at any time. 

So sometimes you just shouldn’t dream at all. I am so sick and tired of working what I want to do around the needs of everyone else. 

[Laura Corin]

16 minutes ago, TexasProud said:

She won’t change them from it being my stepdad first and he won’t change from it being my mom first to my stepbrother.  They are very devoted to each other.  Forms are drawn up, but they do not believe they are needed. 

 

My stepdad is planning trips and looking for RV vans for them to take trips when this “blip” is over.  He does not understand the severity despite being in the room when the doctor says there is no cure and mom has a new baseline.  Mom keeps waiting to do things when she feels better, but she is never going to feel “normal” again.  Well, I guess I do not know that for sure and I don’t want to take away hope. But plans need to be made for eventualities. Mom is 78 and he is 70. 

So is there a POA in place at all? It needs to be signed when the instigator is mentally competent. 

[TexasProud]

7 hours ago, mom31257 said:

I'm glad you are keeping the caregivers.

We found out about my mom's illness when it was stage 4 as well. It was 5 months later that she passed away. It was a very busy time with my kids, and I wish we had put more things on hold. My dad and older sister were doing a lot for her, but I wish we had taken even more time to visit than we did. You can't get the time back once they are gone. 

Yes. Honestly, that is the way I thought it was going to go. It is why I have been up there 3 or more days almost every week. But now that the scans have shown improvement snd mom is cognitively almost back to normal, I am seeing this is going to be a 2-3 year thing if not more.  Part of the purpose of the post is to make sure I can do this long term and not kill myself in the process.  When she was going downhill so fast, yes, I was going to be there as much as possible. 

 

My daughter will be in shows and I want to see them and they are 18 hours away, so I will be working with my sister to at least make that happen. 

[TexasProud]

Just now, Laura Corin said:

So is there a POA in place at all? It needs to be signed when the instigator is mentally competent. 

Yes. They made their wills and all of those documents in 2019.  If I had realized how badly my stepdad’s mental stuff had declined, I would have tried to approach mom. But she wouldn’t have agreed. 

[TexasProud]

And to tie in with the other discussion, my lifeline during all if those years was choir and praise team. Those were my non-negotiables that kept me sane. My joy of singing and interacting with others.  

Hugs and singing and interacting in close quarters is lifegiving to me. This pandemic has taken away those outlets. That is why I am struggling with this pandemic going on snd people saying get over it. no big deal to live with it you wimp. 

Yeah, it is a big deal. 

[Pawz4me]

20 hours ago, mom31257 said:

I'm glad you are keeping the caregivers.

We found out about my mom's illness when it was stage 4 as well. It was 5 months later that she passed away. It was a very busy time with my kids, and I wish we had put more things on hold. My dad and older sister were doing a lot for her, but I wish we had taken even more time to visit than we did. You can't get the time back once they are gone. 

 

20 hours ago, TechWife said:

I agree that the OP’s life & dreams are important. However, there are times in all of our lives we have to put our life on hold in order to care for others. Look for ways to keep optional personal activities happen, but realize we can’t do everything we want to do. It isn’t always easy to put dreams on hold, but it is often necessary. Caring for elderly parents is right up there in importance with caring for a newborn baby. The needs do outweigh our desires at times. It sounds harsh, but blanket statements can sometime lead to unrealistic expectations. We cannot “have it all” and we do ourselves a disservice to think we can. Life just doesn’t work that way. 

 

 @TexasProud-- "regret proofing" yourself during this time doesn't mean you have to do it all yourself. Hiring good people to help out may be the very best way to "regret proof" this season of life. If you have good, reliable/trustworthy people I'd do everything possible to keep them on. Many people with stage IV cancer--even when it has spread fairly widely--can live for a long time with the newer treatments available now. This isn't necessarily a short season of life. Do what you can to "regret proof" yourself going forward, but also do what you can to maintain your own quality of life.

I'll probably delete at least some of this later for privacy, so please don't quote.

Edited December 15, 2021 by Pawz4me

[mom31257]

3 minutes ago, Pawz4me said:

 

On the cancer board I belong to one of the caregivers refers to this time as "regret proofing" her life. And that resonates with me in many ways. I feel like I failed my mom in her final months (she had other issues, not cancer). Even though at the time I felt I was doing the very best I could, with the benefit of hindsight and age/experience I know I could have done things differently and better. But still . . I did the best I could at the time, and I'm at peace with that now, but it did take several years for me to get to a peaceful place about it. I'm trying very hard and very consciously to get it right with DH. I still may fail, but I'm trying my very best. That's all any of us can do.

Hindsight does shine things in a different light. Even though I have that feeling sometimes, I'm thankful it isn't something I dwell on. My mom knew how much I loved her, and I know that's what really matters. They seemed to be managing her condition pretty well, and she took a sudden turn. I do wish I would have realized it could go like that. 

[TexasProud]

47 minutes ago, mom31257 said:

Hindsight does shine things in a different light. Even though I have that feeling sometimes, I'm thankful it isn't something I dwell on. My mom knew how much I loved her, and I know that's what really matters. They seemed to be managing her condition pretty well, and she took a sudden turn. I do wish I would have realized it could go like that. 

I will always be grateful for my pastor when my dad died. Though I never said it out loud, I second guessed myself .  He stopped after the graveside and said, “Be proud of the way you took care of your dad. You did a good job. Don’t ever question yourself about that. “

I understand the concept of living each day as if it is your last. It is true to a certain extent.  But you can drive yourself nuts if you are constantly analyzing whether you have done everything right every second. Ask me how I know. 🙄

You did a good job. It was enough. 

Oh, and take out your quote please. That poster asked not to be quoted.

Edited December 14, 2021 by TexasProud

[almondbutterandjelly]

I have been down this road myself.  I highly recommend getting them into Assisted Living, if you can.  If it can be afforded.  We lost my mom, who refused Assisted Living, but my dad is there now and doing so much better.  And I got my life back.

I think old people want to stay in their own homes at great cost.  It's not always a good idea.  And we truly do not have to martyr ourselves for our ailing parents, even thought they would happily have us do that.  

Keep the caregivers and explore Assisted Living.    (big hugs)