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Being a mom or SM, wife, and caregiver to elderly parents or relatives....

Posted by on Nov. 18, 2013 at 10:36 AM
  • 29 Replies

This is long so if you're in a hurry, skip it.  It's long. 

I have been hunting for a caregiver forum but haven't had any luck and I guess the questions I have really have more to do with step life, married life, etc than they do straight up caregiving so I'm just going to post here.  If anyone has recommendations of other sites, I'm all ears.

In the last 12 mos, I've been back home twice to care for my own mother (CHF, A-fib, strokes) and now just got back from spending about a month caring for my maternal grandmother.  I ended up moving my grandmother from rural WY to where my mom lives as there is more access to care. (I was not in a position to move Gma to my house--she can't navigate stairs and we livein a 3 level townhome.)

Anyway.  My Gma had been in a nursing home for 4 mos where she was supposed to be getting stronger in order to have a surgical procedure done.  Long and short, my uncle went to WY, pulled her out of the nursing home against Dr. orders, called me to come out saying she'd been discharged because she was doing so well, just needed a week of help, and bailed.  Gma was in bad shape when I got there.  Luckily, I have experience in home health and over the course of a few weeks, she started eating, gaining weight, getting stronger, etc. 

However, I just couldn't stay out in WY forever.  My husband is supposed to be leaving any time now for Pakistan for a year.  We are planning to see the kids over Thanksgiving.  I am supposed to keep the kids for BM when she has surgery around Xmas. I have responsibilities here that I can't just drop. Especially since Gma HAS two adult children who *should* be able to help her.

So I left Gma with my Mom. I arranged home health care to come in daily. I've made the Dr. appts. I've arranged everything.  I put together a book with a checklist for her meds, her meals and snacks, to keep track of her vitals.  Everything that needs to be done is mapped out.  I have even been sending my mom a menu plan for the week so she has recipes and a shopping list so that she doesn't have to think very hard about getting the appropriate nutrition into Gma.  (Gma was starving to death in the nursing home--refusing to eat.  Dr can't believe she's alive.)

But my mom isn't doing such a great job. Gma has actually lost 5lbs since I moved her--94.6 now--she had gained weight when I was there and was up to 100.5.  Should be about 130 if she were fit and trim.  She has another infection. (I had been administering IV abx when I was there)  My mom doesn't take the greatest care of herself so now it's like I have two people in one place to worry about.

I feel like I SHOULD go back home (to Mom's) and try to keep this crap from going off the tracks.  I can't even begin to outline the amount of crap I'm trying to coordinate from states away that would be so much easier if I were there.  (my mom just can't/won't!) But I want to go home (with DH) and have a nice holiday with the kids.  And when it is time for BM to have her surgery, I already told her I would keep the kids. 

Ultimately, DH and the kids and BM for that matter will work it all out without me one way or the other.  They survived without me before I was around, they'll figure it out.  (but I do want to go!)  However, MY family is totally struggling and I'm afraid that if I don't go back home and try to help out with Gma, she is going to end up dead and/or my mom is going to lose her mind or get herself sick again just from the stress. Plus, my mom just doesn't get the medical stuff and isn't cluing in to when there's a problem. 

I'm feeling very torn and I don't know ANYONE who has been in this situation.  I want to spend time with my "current" family--DH, the kids--especially knowing that it may be the better part of a year that I don't see any of them.  But I have always been the go to in my nuclear family and they need me right now.  I'm afraid that if i don't head home soon (and I've only been gone 10 days) that my Gma is going to die because we didn't try hard enough.  Because I didn't try hard enough.

If you read all this, you get a cookie.  I wish I had someone else to talk to about it but I simply don't know anyone who can relate.  At all. 






by on Nov. 18, 2013 at 10:36 AM
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Replies (1-10):
KnowItAll
by Silver Member on Nov. 18, 2013 at 10:46 AM
1 mom liked this
Thinking back to packer's post about motherly duties, it has always been my opinion that the ultimate duty of a mother is the weight of responsibility she bears that no one else bears with her. If you were talking about being torn between your own kids and your grandma, then I would have no advice. But you're not. Your new family consists of a grown man who can care for himself and two children who have two parents to care for them. You should go and be with your grandma if you truly want to be. I believe you will regret it if you don't. There will be many more holidays to share with your new family.
GlockMom
by Platinum Member on Nov. 18, 2013 at 10:59 AM

I would make the trek back for the holiday with my husband, then I would go back and take care of my family.  BM needs to find help with the kids for her surgery.  You have no obligation to her.  Why are you worried about her when you have a mother who can't take care of herself that is also now shouldered with taking care of her mother?

HopesNDreams
by Silver Member on Nov. 18, 2013 at 11:00 AM


I read every word, paused, and had one clear thought of what you should do. Talk to you grandmother. I don't know if she can communicate or have a conversation. I don't know if the conversation will be in the here and now or with the grandmother from your memory, but that is the person I would be talking this out with. My mom was a hospice nurse, so I grew up with a very 'end of life' familiar world.

In my most honest opinion, and please forgive me if I am wrong or offend you, she may be ready to move on. However, you may be so filled with love and skill that you can keep her going on. I think it is very important to you that she be comfortable, safe, and loved during this time. Heaven her help her, but your family is not up to the task! Are there hospice services local to her? Is there any reliable facility that would give you peace of mind while you enjoyed the holidays? Could local elder care services help find something?

I know you want to be with DH and the kids. I think the key will be finding competent care for your grandmother. You can leave endless lists for your mother, but she is just not up to the task. I feel like there is a solution for you, but it will take some work to find.
Tigress22304
by Platinum Member on Nov. 18, 2013 at 11:06 AM

sweetheart-the kids have their parents....who exactly does your grandmother have?! sounds like your mom isn't the best choice-and don't even get me started on your uncle (is that who yanked grandma out?)

If I were you, then without a doubt I'd go and let DH and BM handle the kids.

Grandma outranks them all in my eyes.

Birdseed
by Platinum Member on Nov. 18, 2013 at 11:07 AM


I'm not "worried" about BM, but I did say I'd do it--and that was 2 months before the rest of this stuff blew up.  Also, rather selfishly, I do enjoy seeing the kids and realize that it will probably be awhile after that if I/we don't go then.


Quoting GlockMom:

I would make the trek back for the holiday with my husband, then I would go back and take care of my family.  BM needs to find help with the kids for her surgery.  You have no obligation to her.  Why are you worried about her when you have a mother who can't take care of herself that is also now shouldered with taking care of her mother?



Birdseed
by Platinum Member on Nov. 18, 2013 at 11:18 AM

You're not offending me at all.  Having worked in home health/hospice, I'm very comfortable with letting her go if that's what she wants. 

While my grandma has some mild dementia to begin with, the pain meds she's on really take that up a notch.  But I HAVE had multiple conversations with her over the months, including in the last week, about how if she's "done", that is okay. Her husband has been dead nearly 10 years, her best friend about 5.  She's lost two children at young ages. She doesn't have hobbies or interests, she doesn't have a whole lot to "live" for by most accounts.  We all support her if what she wants is to go.  But she is adamant that she isn't ready to die.  Thing is, she's doing about zero to mitigate that.  Refusing to eat in the nursing home, etc--I've explained to her that if she chooses to "go", we can make her much more comfortable with different medication, but that  if she wants to live, she can't be in a morphine coma. She has to get stronger/healthier before she can have the surgery.  (she has a pinched nerve--she's not terminal, she's just in pain.  She started ODing on her pain meds, stopped eating, etc which is what landed her in the nursing home to begin with)  I think her biggest reason for not wanting to let go now is that her youngest son killed himself and she feels like letting go is like committing suicide. 

As far as home health/hospice for her now...I've GOT people coming in 8 hours a day, 5 days a week.  That was the reason I moved her.  Those services were not available in Wyoming. All I need my mom to do is stop giving her pain meds ahead of schedule and make her DINNER.  And on the weekends, give her snacks and make her do PT.   I'm working to get her on medicaid so that we can continue doing all of this and not out of pocket. My uncle wiped out her finances while he was out there and was the POA.  (that's been changed, but still, he took 20k so there's not much left to pay for her care)  I guess he was under the impression that she had more assets so that's why he yanked her out of the nursing home. I think he thought that if she stayed off of medicaid, he'd gain financially.  But he didn't realize that she doesn't have a pot to piss in. Her reverse mortgage is in the negative now, there is no pension or retirement.  All she had were her credit cards and cash. And he's maxed it all out.

So.

Yeah, I feel like a shit bag for letting my mom sign up for this. I THOUGHT I made it clear to Mom what the situation was but I don't think she is the caretaker type.  She's just not cut out for it.  She is so intimidated and confused by doctors that she doesn't speak up or ask questions.  She just doesn't know much about the medical.

Anyway....

You guys ARE being helpful FWIW.  I think it is probably going to be a good idea for me to head back.  I had just hoped for a little longer break.  Doing the 24/7 nursing care by myself was really wearing on me.  I'm still pretty damned tired to be honest. 



Quoting HopesNDreams:



I read every word, paused, and had one clear thought of what you should do. Talk to you grandmother. I don't know if she can communicate or have a conversation. I don't know if the conversation will be in the here and now or with the grandmother from your memory, but that is the person I would be talking this out with. My mom was a hospice nurse, so I grew up with a very 'end of life' familiar world.

In my most honest opinion, and please forgive me if I am wrong or offend you, she may be ready to move on. However, you may be so filled with love and skill that you can keep her going on. I think it is very important to you that she be comfortable, safe, and loved during this time. Heaven her help her, but your family is not up to the task! Are there hospice services local to her? Is there any reliable facility that would give you peace of mind while you enjoyed the holidays? Could local elder care services help find something?

I know you want to be with DH and the kids. I think the key will be finding competent care for your grandmother. You can leave endless lists for your mother, but she is just not up to the task. I feel like there is a solution for you, but it will take some work to find.



HopesNDreams
by Silver Member on Nov. 18, 2013 at 11:35 AM
Actually, I think it is important for you to take the break and spend the holiday with your family. I think you are a bit burnt out - maybe more than a bit! Some turkey, some pie, and some laughter will recharge those batteries. Likewise, some time without you could help your mother appreciate you a bit - I say this optimistically. From the description, I'm not really sure - she seems overwhelmed. She's not medical or medically nurturing!!!!

It is not a question of if, but how. So HOW do you make it happen??? Because YOU matter too!!!! Caretakers get burnt out...you know this.

As a side, your uncle SUCKS!

Could you prepare the meals/snacks, put them in the fridge with labels and times? Call mom when it is time for PT? Is there any local friends who could stop by and help mom? You will have to follow up with any medical appointments and request that the nurses leave written notes in a notebook.

It is possible. So much of it would be putting your energy into making it possible, not dwelling on the obstacles. I think you need it.


Quoting Birdseed:

You're not offending me at all.  Having worked in home health/hospice, I'm very comfortable with letting her go if that's what she wants. 

While my grandma has some mild dementia to begin with, the pain meds she's on really take that up a notch.  But I HAVE had multiple conversations with her over the months, including in the last week, about how if she's "done", that is okay. Her husband has been dead nearly 10 years, her best friend about 5.  She's lost two children at young ages. She doesn't have hobbies or interests, she doesn't have a whole lot to "live" for by most accounts.  We all support her if what she wants is to go.  But she is adamant that she isn't ready to die.  Thing is, she's doing about zero to mitigate that.  Refusing to eat in the nursing home, etc--I've explained to her that if she chooses to "go", we can make her much more comfortable with different medication, but that  if she wants to live, she can't be in a morphine coma. She has to get stronger/healthier before she can have the surgery.  (she has a pinched nerve--she's not terminal, she's just in pain.  She started ODing on her pain meds, stopped eating, etc which is what landed her in the nursing home to begin with)  I think her biggest reason for not wanting to let go now is that her youngest son killed himself and she feels like letting go is like committing suicide. 

As far as home health/hospice for her now...I've GOT people coming in 8 hours a day, 5 days a week.  That was the reason I moved her.  Those services were not available in Wyoming. All I need my mom to do is stop giving her pain meds ahead of schedule and make her DINNER.  And on the weekends, give her snacks and make her do PT.   I'm working to get her on medicaid so that we can continue doing all of this and not out of pocket. My uncle wiped out her finances while he was out there and was the POA.  (that's been changed, but still, he took 20k so there's not much left to pay for her care)  I guess he was under the impression that she had more assets so that's why he yanked her out of the nursing home. I think he thought that if she stayed off of medicaid, he'd gain financially.  But he didn't realize that she doesn't have a pot to piss in. Her reverse mortgage is in the negative now, there is no pension or retirement.  All she had were her credit cards and cash. And he's maxed it all out.

So.

Yeah, I feel like a shit bag for letting my mom sign up for this. I THOUGHT I made it clear to Mom what the situation was but I don't think she is the caretaker type.  She's just not cut out for it.  She is so intimidated and confused by doctors that she doesn't speak up or ask questions.  She just doesn't know much about the medical.

Anyway....

You guys ARE being helpful FWIW.  I think it is probably going to be a good idea for me to head back.  I had just hoped for a little longer break.  Doing the 24/7 nursing care by myself was really wearing on me.  I'm still pretty damned tired to be honest. 




Quoting HopesNDreams:





I read every word, paused, and had one clear thought of what you should do. Talk to you grandmother. I don't know if she can communicate or have a conversation. I don't know if the conversation will be in the here and now or with the grandmother from your memory, but that is the person I would be talking this out with. My mom was a hospice nurse, so I grew up with a very 'end of life' familiar world.



In my most honest opinion, and please forgive me if I am wrong or offend you, she may be ready to move on. However, you may be so filled with love and skill that you can keep her going on. I think it is very important to you that she be comfortable, safe, and loved during this time. Heaven her help her, but your family is not up to the task! Are there hospice services local to her? Is there any reliable facility that would give you peace of mind while you enjoyed the holidays? Could local elder care services help find something?



I know you want to be with DH and the kids. I think the key will be finding competent care for your grandmother. You can leave endless lists for your mother, but she is just not up to the task. I feel like there is a solution for you, but it will take some work to find.




runinpinkshoes
by Silver Member on Nov. 18, 2013 at 11:54 AM


I agree with Knowitall, in that you'll have many holidays with your current family but not much longer with your Gma.

I completely get that it must be exhausting, but you seem to be the best option of care for your Gma right now, and I feel like if you weren't there and she continued to decline, you may even be too worried to enjoy your holiday. 

It's a selfless act and should be commended, but ultimately I think it's what you'd feel best about in the long run, based on what you've written.

Quoting Birdseed:

 I think it is probably going to be a good idea for me to head back.  I had just hoped for a little longer break.  Doing the 24/7 nursing care by myself was really wearing on me.  I'm still pretty damned tired to be honest.  


progressandjoy
by Silver Member on Nov. 18, 2013 at 12:00 PM

Sorry Bird, I know it's rough.

I left my job earlier this year in order to take care of my grandmother, who was suffering from Alzheimer's. My mother had been doing it for the past three years and was having a very hard time juggling taking care of grandma, taking care of my young foster brother, dealing with a new teenager, and trying to find time to spend with her husband. She was exhausted and nobody would help out; my aunt lived next door to my grandparents and always had an excuse as to why she couldn't walk next door and just hang out for a while.

My grandfather started having strokes (six in four month period; two that were major). A couple of years ago our town was devastated by a tornado. It whipped out a hospital and many doctor's offices, so my grandfather has to travel four hours away to the doctor that does his stints. When my grandfather's health started to deteriorate, my mom called to ask me for help.

I didn't handle any medical decisions, so I can't speak from experience about that. I was just a companion, who spent time at my grandparent's house and took care of their daily needs. My grandfather was very self-sufficient, so he actually did most of the things around the house, but his strokes left him more snappy and irritable with my grandma's forgetfulness.

I spent about thirty hours a week at their house (most of it was evenings and overnights), on top of going to school full time, taking care of SS, and spending time with DH. I felt like in the scheme of things I wasn't doing a lot, but my mom really appreciated the break.

Unfortunately, my grandmother's Alzheimer's got the best of her. It was like a light switch. She was fine one day, but the next day she forgot how to walk. She passed away within the week. It was very hard.

I don't really know what I would advise you to do ...

Honestly I probably would suggest that you take a break and enjoy your family, but at the same time I know how hard it is to feel like you could be doing more.

thecircus8
by Silver Member on Nov. 18, 2013 at 1:22 PM
Your story sounds very similar to mine. I was the caretaker for my Granny the last yr and a half of her life. She had moderate then severe Alzs. My then SO now DH was two hrs away. My Dad, and Uncle lived within 5 mins of us. I had two small DDs. They never once helped. It was hard, so very hard at the end. She required 24hr care. I was mentally and physically exhausted. She fell twice in one day. The first time I could get her up. The second I couldn't. I called the EMTs and basically had a mental breakdown in the ER. My DH drove two hrs and took the girls back with him. Social services had to be care, my granny was suppose to go into the nursing home a week before but because of greed my uncle vetoed it. It was a mess. I am so glad I was able to do it but wished someone had helped or listened when I and the doctors said it was time for LTC. My advice is to see if take care of yourself first and always,then take care of her. I would see if your mom and grandmother can hold out til after Thanksgiving then go back. I know that that won't be a popular opinion but you have a life too. You will end up resentful and unhappy if you can't live your life also. I Am Not saying don't help, I am saying that you need to make sure your "bucket is full" before you fill someone else's!
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