Help me think through what I need to do for my mom

[Drama Llama]

My brother arrived at my mom's independent living apartment on Christmas Day to find her still in her nightgown (not like her at all) with blood on her floor and on her sheets.  She had fallen in the night, and cut her elbow, and then struggled for a long time to get up and get back in bed.  Her knees were badly bruised from the struggle. 

He helped her back to bed, stayed and opened presents and visited, and they got the food from the dining room to go.  They FaceTimed me but didn't give a lot of details. Then he made her a sandwich for dinner, left it at her bedside and drove back to his house 2 hours away.

That evening I called again, and we spoke for a longer period of time, during which it was clear that she was coughing.  Her sister also called her and then called me, alarmed by her cough and the fact that she was in bed. 

The next morning, I called the clinic in the independent living place, but they were closed.  The front desk suggested I call the assisted living place and one of their nurses came up, and gave her a covid test, and misread it.  It was clearly positive.  I managed to arrange a virtual doctor's visit for her, and got a pharmacy to deliver paxlovid to her door.  I also arranged for 3 meals a day to be delivered to her door.  She sees a PT in the building, and they were willing to do a session with lots of PPE, so she had one visit from them, and got some of her trash removed and some help problem solving some issues, but the home nursing agency that sees people in her building doesn't take new patients with covid, and the housekeeping staff won't come in to the apartment of someone with covid, so she's been alone otherwise.  She gets up and walks to the door for her meals, and I think she's doing a few things like brushing her teeth, but otherwise she's in bed because she says she's not strong enough to get up out of any of her chairs.  She hasn't bathed in all that time.  

Obviously, I'm alarmed, but I'm also far away, and the SW meltdown is making it harder to get for her.  My plan right now is to fly there on Sunday night, and stay for a few days.  Her PT is going to come on Monday to help us problem solve issues of independence.  On Tuesday I have a nurse coming to do an intake assessment for home health care, which she is adamant she doesn't need since covid "lasts a week" so she'll be better by then.  

So, wise hive members, I need your thought on four questions

1) If your elderly family member had covid, and was well enough to stay home but got much weaker and less mobile, did they gain back their mobility?  She used a rollator before this, but was taking aqua aerobics, and going down to the dining hall, and out to the movies with friends and such a few weeks ago.  

2) What things were helpful to have in place at this point?  I'm thinking of things like a lift chair, or one of those benches where you sit down and slide across into the shower?  Are there gadgets that help with things like opening containers or cutting food when hands are weak with arthritis?  At this point, I think she has much less mobility and dexterity than Pop, plus someone is always with him so if something is hard, we just do it.  

3) I'd rather not get covid, but if I do get covid, I don't want to share with Pop.  I'll mask with her, and sleep at a hotel, but I don't think she can mask.  What should I do about isolating/quarantining.  I've reserved a rental car to get me home, so that if I'm contagious I don't share it on the plane, but do I mask around my kids when I get home?  How long do I stay away from Pop?  

4) Any suggestions on negotiating a fair division of labor with my brother?  

 

[almondbutterandjelly]

IMO she needs someone to stay with her right now. Can brother drive back down and stay with her until you get there on Sunday?

[Drama Llama]

Just now, perky said:

IMO she needs someone to stay with her right now. Can brother drive back down and stay with her until you get there on Sunday?

You would think he could.  But he has not been willing to do that. 

[Beth S]

IMO this is quite a setback for your Mom. 
I would look into options where she can move to live in your town, or your brother's town.
Sometimes the Independent Living Village has a "next step" when the resident as a decline like this.
It could be that after the holidays are over, more staff will be available for advice & help.

And also = No senior EVER wants to move.  It will nearly always be against their will (or preference).
Our current strategy is to give the parent 2 options to choose from.

ETA - when my elderly father got covid during the lockdown, my cousin loaned him a Pulse Ox monitor.
I called every morning, & talked with him on the phone while he checked his levels (twice).
It gave us some peace of mind, when we couldn't visit in person.

ETAA - if your relationship with your Mom is not healthy, then I would reconsider moving her to your town.

Edited December 30, 2022 by Beth S

[Melissa in Australia]

Hugs

My will be 101 in 3 weeks  mil had covid about 9 months ago. She recovered and was mostly back to herself afterwards. She is in a retirement village. 

She has covid again right now and has fallen 2 times, the second time she hasn't recovered the ability to walk. She said she is feeling a bit stronger. She has already been on the Max services the retirement village offers, daily checks, assistance with showers, meals brought to her room etc. But I have been told by relitives in the same country that the facility doesn't have lifting machines and she needs to go the the nursing home. She is refusing to sign the paperwork to even get on the list.  

[prairiewindmomma]

1. Yes

2. The PT and home health care intake should tell you quite a bit about her functionality. I’d wait a bit to see what she actually needs.

3. 10 days

4. There is emotional back history for each of you with your mom. Open the discussion, but acknowledge that this has layers of emotional complication for each of you, iykwim.

[Drama Llama]

2 minutes ago, prairiewindmomma said:

 

3. 10 days

 

10 days from when?  If I last see her on Wednesday, that will be 12 days since she had symptoms, and 10 days from when she was diagnosed.  

[Drama Llama]

4 minutes ago, prairiewindmomma said:

 

2. The PT and home health care intake should tell you quite a bit about her functionality. I’d wait a bit to see what she actually needs.

 

My concern with this is that if they say on Wednesday "oh, a bath seat would help", I can't find, purchase and install it before I leave.  

 

5 minutes ago, prairiewindmomma said:

 

4. There is emotional back history for each of you with your mom. Open the discussion, but acknowledge that this has layers of emotional complication for each of you, iykwim.

There is, but it's pretty clear that someone with an emotional back history is still going to have to step up, and it feels like it shouldn't always be the same person.  

 

[Laura Corin]

My mum had covid at age 97 and went back pretty much to her normal afterwards. Best wishes to you both.

[Drama Llama]

28 minutes ago, Beth S said:

IMO this is quite a setback for your Mom. 
I would look into options where she can move to live in your town, or your brother's town.
Sometimes the Independent Living Village has a "next step" when the resident as a decline like this.
It could be that after the holidays are over, more staff will be available for advice & help.

And also = No senior EVER wants to move.  It will nearly always be against their will (or preference).
Our current strategy is to give the parent 2 options to choose from.

ETA - when my elderly father got covid during the lockdown, my cousin loaned him a Pulse Ox monitor.
I called every morning, & talked with him on the phone while he checked his levels (twice).
It gave us some peace of mind, when we couldn't visit in person.

ETAA - if your relationship with your Mom is not healthy, then I would reconsider moving her to your town.

Moving here would be really hard, both because of relationship issues and because I'm stretched thin with our own stuff going on.  I don't think moving her to my brother's rural area makes sense.   He clearly isn't going to step up and help her.  Her medical providers are in the city where she lives, and her social network.

Her place has the aging in place model.  I just didn't think about the fact that you can't really make the transitions when you're contagious.  So, if she needs more support we can do it, we just can't access it now. 

She has a pulse ox.  I shipped her one early in the pandemic.  I have her check when I call.  I call after every meal to make sure she didn't fall coming back from retrieving it at the door, and she was able to eat it (once they sent something she couldn't get the lid off, several times it didn't show up at all and I had to call and get that sorted) and I have her check.  She also has a blood pressure machine.  

[Starr]

You are getting things going from your end. I would prioritize getting her into the next level of care as soon as possible. 

[Drama Llama]

56 minutes ago, Starr said:

You are getting things going from your end. I would prioritize getting her into the next level of care as soon as possible. 

I feel as though she was in the right level of care before this, and I'm hesitant to move her to assisted living which is very expensive without knowing if she will get back to her previous level of mobility.  Arranging CNA's to come into her current apartment seems to make more sense since it will give us flexibility.  Maybe I'm being overly optimistic?  My optimism is somewhere between "she needs a permanent move to assisted living" and her view that "they said I'd be done with covid on January 2nd so when you get here I'll be fine, I don't know why you're fussing" (I'm pretty sure they said she'd be done being contagious on January 2nd.  Not that all symptoms would be gone then).  

[Katy]

DH’s over 100 year old grandmother went to a nursing home after hip surgery, there was an outbreak, she tested positive, had very little symptoms but was isolated for 10 days at the nursing home she was in, and got back more mobility than she had previously over the next 20 days. She was tired, had anxiety & paranoia that were unusual for her but not typical symptoms. 

Now, she was also an elementary teacher for over 40 years and was fully vaxxed & boosted so I suspect her immune system is stronger than average. 

I don’t know what the answers are either, but I said a prayer something comes to you. 

[Starr]

It all depends on how you view the situation when you get there. If her care level doesn’t change you will have to be ready for the next shoe to drop. These stages don’t often go smoothly. It’s so exhausting. Hugs to you. 

[Terabith]

I don't know the answers to 1 and 2.  I think there's a very good chance that she'll get back to baseline, but probably not right away, and I'm not sure what would make sense, equipment wise.  I am not sure it makes a lot of sense to invest a lot of money in equipment for what might be very temporary.  I wouldn't assume she'd be back to normal in 5-10 days though.  

As far as number 3, obviously you don't want to share with Pop, so I'd probably avoid him for five days post return and maybe mask for another five.  But I think your risks of contracting covid from your mom are fairly low, since you won't be there until certainly she's five days past infection and maybe closer to ten days?  I would really push to have her wear a surgical mask while you're in her apartment, and I think if you're wearing glasses and an N95 mask and washing hands/ changing clothes immediately afterwards, that your risk is fairly low, and I don't think it makes sense to avoid seeing your kids or to keep your kids away from Pop during that five to ten days after you get back.  

As far as number 4, I think FAIR would involve the person who was PHYSICALLY THERE the day she got sick staying around to make sure she was okay (i.e. longer than a couple of hours) or at the very least coming back mid week to do things like help her shower/ change sheets/ do laundry and hire a home health aid to stop by a couple times a day would make sense.  But he seems to be completely unwilling to do anything, and I think you need to let go of the idea of fair, since you cannot compel him to do anything.  

What she's going to need, long term, I don't know.  I certainly don't think she needs to move to assisted living right away, because it's not practical and this could very easily be temporary.  I think the home health care people stopping by to check on 2-3 times a day for a bit and a couple times a week helping with laundry and bathing would be good.  I don't think I'd have her move to your town, because her relationship with you is so fraught and because you are already pulled in so many different directions.  Whether she needs to be close to a child is kind of irrelevant, because she's lived her life in such a way that she's alienated everyone she's related to.  I think your role might be problem solving, but it should absolutely not be very much hands on care.  

[Drama Llama]

18 hours ago, Terabith said:

As far as number 4, I think FAIR would involve the person who was PHYSICALLY THERE the day she got sick staying around to make sure she was okay (i.e. longer than a couple of hours) or at the very least coming back mid week to do things like help her shower/ change sheets/ do laundry and hire a home health aid to stop by a couple times a day would make sense.  But he seems to be completely unwilling to do anything, and I think you need to let go of the idea of fair, since you cannot compel him to do anything.  

Please don't quote this part. 

I'm struggling with this today.

In addition to not being willing to go see her (he can't leave his dog that long, he has work, he doesn't want covid . . . ), my brother hasn't handled any of the phone calls that this has required.  Today, I told him I was going skiing with my kids, and could he please call her at 12:30 to make sure her lunch was delivered (there have been issues with meals not showing up) and that she managed to get out of bed, go to the door to get it, and then return to bed without falling.  I also emailed what to do if lunch doesn't come (e.g. call these people at the facility), or if she doesn't answer the phone.  He assured me that he would.  At 12:45, she called me to tell me there's no lunch.  I tell her to call him.  She calls back.  He's not responding.  So, I call him, no answer.  I text him. No answer.  I go down my list of numbers to call.  I reach someone and they send her lunch.  I talk to her again to make sure she got it.  At 1:58 he texts "Just saw this.  Everything OK?"  But the kitchen closes at 2:00, so if I'd left the problem to him she wouldn't have eaten.   Meanwhile, I'm having these conversations on the side of a mountain, in 20 degree weather, with my gloves off so I can dial, and my helmet off so I can hear, when I really want to be having fun on the last day of my kids' vacation that we'll be together.  Luckily they're old enough to ski on their own, but we wanted to be together.  

My kids are very anxious about me going tomorrow.  It's not a completely rational worry, but also not a completely irrational worry.   They're trauma history is showing. They're worried about what will happen when I am gone, or that I'll get covid and won't be able to get back, or I'll get covid and get very sick (I've got high blood pressure so I'm technically high risk), or that I'll bring covid back to Pop.  

And meanwhile, my brother is less than a two hours drive away.  He has no kids.  He works 100% from home.  He has no health issues that make him high risk.  He makes significantly more money than I do.  I am paying for a plane ticket and a hotel, and stressing my kids, and calling in favors from DH's family, and putting my health at risk, and he can't make one phone call at 12:30.  

And yes, she wasn't a perfect parent to him, any more than she was to me.  But someone has to do it.  

So, how do I make peace with the idea that it's all on me?  My SIL (one of the ones I love, not THAT SIL) made a mistake that has made my life really difficult this week.  It was a mistake, and she's entitled to make mistakes.  But I could feel my anger bubbling up, because of course she's a safe person to be angry at, except she didn't deserve it at all.  I managed not to snap at her, but it was a close thing.  

I'm going to delete this so please don't quote.  But for those of you who have elders who need care, how do you make peace with the fact that it falls all on you (if it does) when there are multiple siblings?  

[almondbutterandjelly]

You roll up your sleeves and do what’s got to be done. Elder care is such a tough thing. People do what they can and draw boundaries on what they can’t. Sometimes it falls mostly on one person. That’s just what happens. No, it isn’t fair. Big hugs to you.

[Laura Corin]

@BandH I'm sorry, that's hard.  It mostly did fall to me, but one brother is disabled and the other cleared Mum's house. 

In the end,  I just decided to feel good about myself for making the effort, rather than thinking about what others were doing or  not. 

[TechWife]

On 12/30/2022 at 2:11 PM, BandH said:

My concern with this is that if they say on Wednesday "oh, a bath seat would help", I can't find, purchase and install it before I leave.  

 

 

 

Either you or the home health agency can arrange for a medical equipment company to do this for her. It's something they do all the time.

[prairiewindmomma]

Putting on my flame proof suit…,There was a time about 15 years ago where I saw a lot of elder care that needed to be done that no one else was willing to do. I stepped in and did it, at cost to my immediate family. I understand how it can feel very unfair.

A different situation has since arisen, in which we are choosing not to step in, and most other family is estranged as well. They have funds, are able to access care, and while there are some very limited things we are willing to do—we would not do any of the things you listed as needing to be done. 

It sounds as if your brother has set a boundary that he is not articulating to you about what he is willing or not willing to do.

Likewise, you can choose what you are willing and able to do and what you are not. You are angry at your brother—but it is a load you are choosing to bring onto both of you. He is free to shrug that off.

If mom can text you to say a meal is missing, she is more than able to call meal services to ask where the food is. Don’t put monkeys on your back that don’t need to be there.

[TechWife]

6 minutes ago, prairiewindmomma said:

If mom can text you to say a meal is missing, she is more than able to call meal services to ask where the food is. Don’t put monkeys on your back that don’t need to be there.

I think this is a great point.

[TechWife]

Some thoughts - generated by your posts and others' responses:

Since the place where she lives has graduated levels of assistance, let them take the lead on when she needs to move. They should have strict criteria for independent living vs. assisted living vs. nursing home care. They probably require periodic functional assessments as well - they don't want to be liable if she's in an inappropriate placement and gets injured or  risk being neglectful for not providing the level of care she needs. Once she no longer meets their criteria to live independently, they will tell her she needs to move into assisted living or find another place to live. If she doesn't want to move to assisted living at that point in time, then part of her being independent is finding her own place to live and no relying on you or your brother to do that for her. 

Do not sacrifice the well being of your children to care for your mother. I don't know anything about parenting kids that have been through trauma, so I can't give any specific advice. Do you or they have a therapist you could consult to look for ways to address their needs and set your own boundaries so that you can set priorities appropriate to the situation?

A great deal of things that you are talking about doing can be done by phone - you do not need to be there for home health to assess her. If she gives the appropriate permissions, then they can call you to let you know what they are recommending or you can call them. If she doesn't give the appropriate permissions, then she's making the decision that she can handle it herself. You also don't need to be there to arrange for any equipment like a shower seat - that can be done anywhere. Physicians offices are used to updating family by phone when needed.

Not living near my parents, I set some parameters for when I would go down there. Mine would be entirely different than yours because I had multiple siblings that lived near my parents. It was kind of like a decision tree  - I was more inclined to go down for serious surgeries (like my dad's lung cancer surgery) or to provide respite for my siblings. I was the point person for insurance and financial stuff and I did all of that remotely, though I needed to go down to meet with an attorney a couple of times. While this was pre-covid - I wouldn't have gone down for something like the flu unless there were serious, life threatening complications in play. All of this to say  - you can care for her without always being physically there for her.

 

[Katy]

I think @TechWife gave very good advice.  I also think it’s fine to be angry. I’d probably modify what you said here and basically text that to him. It might expose the lack of relationship or he might step up, but you won’t know if you don’t give him the chance. Besides, he’s had the benefit of being the favorite, right?

[Scarlett]

1 hour ago, prairiewindmomma said:

Putting on my flame proof suit…,There was a time about 15 years ago where I saw a lot of elder care that needed to be done that no one else was willing to do. I stepped in and did it, at cost to my immediate family. I understand how it can feel very unfair.

A different situation has since arisen, in which we are choosing not to step in, and most other family is estranged as well. They have funds, are able to access care, and while there are some very limited things we are willing to do—we would not do any of the things you listed as needing to be done. 

It sounds as if your brother has set a boundary that he is not articulating to you about what he is willing or not willing to do.

Likewise, you can choose what you are willing and able to do and what you are not. You are angry at your brother—but it is a load you are choosing to bring onto both of you. He is free to shrug that off.

If mom can text you to say a meal is missing, she is more than able to call meal services to ask where the food is. Don’t put monkeys on your back that don’t need to be there.

Maybe, maybe not. I can see her being able to call her daughter but not be able to handle a missing meal with the agency.

[Scarlett]

My xh just went through this with his mom being sick and then dying and his brothers being of zero help even though they are retired. And xh is not.  Xh’s anger really bubbled up in the days just before and day of her death.  He could not get his brother to help at all.  I ended up doing a lot of the paperwork and phone calling and basically just a sounding board for xh.

Also, I will be the only one helping my parents.  My brother is not emotionally capable and he is 2 hours away.  My step sister is 2000 miles away and my mom is not very nice to her.  Step sister will come help if needed……but when they had their bad accident during Covid she was too afraid to fly.  Thankfully my Dh and ds21 are both very helpful.  
 

It is hard.  And honestly I would not do what you are doing.  I would insist she be moved to where I live.  

[Innisfree]

Is it possible to talk honestly with your brother? He needs to hear what you’ve said here, and you need to know if he has non-negotiable limits.

 I have had some anger that my brother wasn’t more involved with my parents. Logically, I know that in his case, it was difficult for him to be physically present. The fact that he later assumed responsibility for settling the estate helped a lot.

Obviously that’s different from your situation, since your brother is physically closer. But perhaps there are ways he can carry a larger share of the burden than he’s doing now.

[Drama Llama]

1 hour ago, prairiewindmomma said:

Putting on my flame proof suit…,There was a time about 15 years ago where I saw a lot of elder care that needed to be done that no one else was willing to do. I stepped in and did it, at cost to my immediate family. I understand how it can feel very unfair.

A different situation has since arisen, in which we are choosing not to step in, and most other family is estranged as well. They have funds, are able to access care, and while there are some very limited things we are willing to do—we would not do any of the things you listed as needing to be done. 

It sounds as if your brother has set a boundary that he is not articulating to you about what he is willing or not willing to do.

Honestly, I'm not sure I'm OK with a boundary that lets him go visit an elderly person, find them sick, disoriented, and bleeding, and simply leave.  

I get that he didn't know, when he went there, that she had covid, and so he assumed that housekeeping would be coming in a few days and that she'd be able to get help from the onsite clinic, but I still think I would have, at a minimum, changed her sheets and probably taken her to urgent care. 

My other sibling has no contact with my mom ever.  That, I can understand.  

I also think that if his boundary doesn't let him call her, then he should have said "no" and not "yes" when I asked.  

Right now, there are funds, but we aren't able to access care.  Once care is set up, I'm not planning to be there providing hands on care.  

1 hour ago, prairiewindmomma said:

Likewise, you can choose what you are willing and able to do and what you are not. You are angry at your brother—but it is a load you are choosing to bring onto both of you. He is free to shrug that off.

If mom can text you to say a meal is missing, she is more than able to call meal services to ask where the food is. Don’t put monkeys on your back that don’t need to be there.

My mom can't text.  She can call me on her land line, and she can facetime me on her cell phone because some high school student doing service learning set it up to be easy.  At this point, she can't get to her desk where her computer, and the phone list with email access is, and the logistics of me talking her through the phone numbers would be more challenging than just calling.  I had to call about 5 different numbers before someone answered and I was able to get them to go get the food. 

I'm pretty sure that the falls happened because she was too fatigued to go down and get food, and didn't problem solve getting it delivered.  So, my motivation to keep her fed is pretty high.  

1 hour ago, TechWife said:

Some thoughts - generated by your posts and others' responses:

Since the place where she lives has graduated levels of assistance, let them take the lead on when she needs to move. They should have strict criteria for independent living vs. assisted living vs. nursing home care. They probably require periodic functional assessments as well - they don't want to be liable if she's in an inappropriate placement and gets injured or  risk being neglectful for not providing the level of care she needs. Once she no longer meets their criteria to live independently, they will tell her she needs to move into assisted living or find another place to live. If she doesn't want to move to assisted living at that point in time, then part of her being independent is finding her own place to live and no relying on you or your brother to do that for her. 

Two weeks ago, she didn't need assisted living, and the place where she lives won't do any kind of assessment or assistance while she has covid.  There is a company that provides nursing care in the apartments where she lives, but that can't start until she's not contagious and then it takes time to get it going.  At this point, she's been in bed, with bloody sheets, and no bath for more than a week.  She wears depends at night, so no bathing is IMO an urgent issue, because skin breakdown in someone confined to bed can get really bad.  The home health company says it would be at least a week after the intake to get services, which would mean at a minimum 3 weeks without bathing.  I'm not OK with that.  I'd rather go now, then go because she's in the hospital with bed sores, and we have a much bigger issue to problem solve.  

1 hour ago, TechWife said:

Do not sacrifice the well being of your children to care for your mother. I don't know anything about parenting kids that have been through trauma, so I can't give any specific advice. Do you or they have a therapist you could consult to look for ways to address their needs and set your own boundaries so that you can set priorities appropriate to the situation?

A great deal of things that you are talking about doing can be done by phone - you do not need to be there for home health to assess her. If she gives the appropriate permissions, then they can call you to let you know what they are recommending or you can call them. If she doesn't give the appropriate permissions, then she's making the decision that she can handle it herself. You also don't need to be there to arrange for any equipment like a shower seat - that can be done anywhere. Physicians offices are used to updating family by phone when needed.

Not living near my parents, I set some parameters for when I would go down there. Mine would be entirely different than yours because I had multiple siblings that lived near my parents. It was kind of like a decision tree  - I was more inclined to go down for serious surgeries (like my dad's lung cancer surgery) or to provide respite for my siblings. I was the point person for insurance and financial stuff and I did all of that remotely, though I needed to go down to meet with an attorney a couple of times. While this was pre-covid - I wouldn't have gone down for something like the flu unless there were serious, life threatening complications in play. All of this to say  - you can care for her without always being physically there for her.

Covid for people of her age and with her comorbidities can be life threatening, so in my decision tree that's when I go.   It sounds like, despite multiple siblings, you went to your parents more than I've gone to her.  

[TechWife]

3 minutes ago, BandH said:

 It sounds like, despite multiple siblings, you went to your parents more than I've gone to her.  

It’s hard to know. I lived away from my parents for 23 years before they died and they didn’t need constant attention until their last year. It was a very complicated family dynamic - not all siblings were always available for a variety of reasons.

[prairiewindmomma]

You can understandably be very upset with him, but you cannot compel him to do anything. I think you guys would be best served by having a very direct conversation with the points you have raised here. It’s entirely possible that he’s largely clueless about caregiving and didn’t realize any of the implications of what he saw (whereas you are very experienced) and it’s possible he just doesn’t give a flying fig and seeing her and making a sandwich was literally all he could muster together (which is more than no-contact sibling is doing). 
 

My point is coming back to the thread (and I will bow out now) is that you truly cannot compel brother to do anything. Your later question was “how do I make peace with this” and, for me, it was the acknowledgment that others can do as they choose and I can likewise choose what I am ok or not ok with. Anything else is angst—the frustration of not being able to make others do what you feel should be done. Being ok with you doing everything is both accepting the burden and being content with it while not feeling frustration that others aren’t doing. 

Edited January 1, 2023 by prairiewindmomma
Fixing autocorrect: Changing likely to likewise

[thatfirstsip]

I think your brother probably intuits that you want him to carry some of this burden, so he tells you yes on the phone. But the truth is, he's not obligated to carry the burden; his relationship with and obligations to his mom are entirely his decision, and it seems like he doesn't intend to help. I'd plan going forward for him to not be helpful and also for him to not necessarily tell you the truth about that.

 

[Drama Llama]

38 minutes ago, TechWife said:

It’s hard to know. I lived away from my parents for 23 years before they died and they didn’t need constant attention until their last year. It was a very complicated family dynamic - not all siblings were always available for a variety of reasons.

In the past 3 years, I've visited 3 times (twice related to the move to assisted living, and Thanksgiving dinner this year), and my brother has visited 3 times (2 Thanksgivings and this Christmas).  I don't think we're providing "constant attention".  

[Scarlett]

Can you move her near you? Or are you thinking that when she recovers from Covid she will once again be able to live on her own?

[Terabith]

27 minutes ago, Scarlett said:

Can you move her near you? Or are you thinking that when she recovers from Covid she will once again be able to live on her own?

That doesn't work for someone who is in their right mind, doesn't want to move, and has all their legal rights.  And it also doesn't acknowledge both the many directions that @BandH is being pulled and the emotional landmines that there are with their relationship.  Plus, all her friends and doctors are in the town where she lives, and she's in a place where she can age in place, just not transition while contagious.  (And in all likelihood, she will recover from.)

[Drama Llama]

50 minutes ago, Scarlett said:

Can you move her near you? Or are you thinking that when she recovers from Covid she will once again be able to live on her own?

No.  That is not the solution.  She has been incredibly judgmental about many of the choices I've made, but particularly the choice to care for my medically fragile child at home, and to help my FIL care for Pop at home.  I'll fly in if there's an emergency like this, and visit with the kids once or twice a year, but her day to day care will be by people she pays.  

My hope is that she'll regain her previous functioning.  If not, we'll either arrange home health care in her apartment, or move her to assisted living.  I had thought we'd do it at the same place.  Now that I know that they can't read covid tests or deliver food, I might encourage her to explore other options. 

How she is now, she doesn't need assisted living.  If her functioning stays at this level, then I think if someone came in twice a day for an hour, and we put in some things in place like a recliner with a lift, and a bench in the shower, and something to notify someone if she falls, that would be perfect.  But of course she could get better or continue to decline.  

[Faith-manor]

Band, I totally understand. I nearly destroyed my marriage trying to manage elder care and hospice care for my father. I would never do it again. My health, my relationships with my kids, it all tanked.

My suggestion is you call 911. Paramedics will not be put out with you. She is in an emergency state, laying in blood, multiple falls, not able to care for herself. Tell them she has covid, she is falling, she is weak, she can't get her food, she could be developing skin sores, and you are too far away to get to her. This really is an emergency at this time. Tell mom she must go with them and have her covid evaluated. Once at the hospital, the nurses and ER doc can get the hospital social workers involved. Chances are she needs some nursing care, they will find a bed in an appropriate place for her, and when she is stronger, they can release her back to her assisted living facility. Only too late did I find out that hospital social workers can move so many more mountains than I ever could no matter how hard I tried.

It may seem drastic, but it isn't. At her age and in her condition, covid plus falling plus potentially not eating enough, plus not bathing properly, plus stress.....it can all cause an elderly person to quickly deteriorate.

Many hugs!!! 💓

[TechWife]

1 hour ago, BandH said:

In the past 3 years, I've visited 3 times (twice related to the move to assisted living, and Thanksgiving dinner this year), and my brother has visited 3 times (2 Thanksgivings and this Christmas).  I don't think we're providing "constant attention".  

I didn’t say you were ??? Whether or not I visited home more or less than you visit your mom really doesn’t matter. Personally, I’d have a hard time remembering how often I saw my parents. 

[ScoutTN]

1 minute ago, Faith-manor said:

Band, I totally understand. I nearly destroyed my marriage trying to manage elder care and hospice care for my father. I would never do it again. My health, my relationships with my kids, it all tanked.

My suggestion is you call 911. Paramedics will not be put out with you. She is in an emergency state, laying in blood, multiple falls, not able to care for herself. Tell them she has covid, she is falling, she is weak, she can't get her food, she could be developing skin sores, and you are too far away to get to her. This really is an emergency at this time. Tell mom she must go with them and have her covid evaluated. Once at the hospital, the nurses and ER doc can get the hospital social workers involved. Chances are she needs some nursing care, they will find a bed in an appropriate place for her, and when she is stronger, they can release her back to her assisted living facility. Only too late did I find out that hospital social workers can move so many more mountains than I ever could no matter how hard I tried.

It may seem drastic, but it isn't. At her age and in her condition, covid plus falling plus potentially not eating enough, plus not bathing properly, plus stress.....it can all cause an elderly person to quickly deteriorate.

Many hugs!!! 💓

This may be a good idea. Like a well being check on a neighbor, except you know there are issues. Hospital social workers are indeed able to make things happen, though in my experience, it helps hugely to have another advocate/family member involved too. Tech challenged elders are extra hard to care for. 

 

[Anne]

(((BandH)))

Anne

[Carol in Cal.]

I agree with FaithManor, except I would start with the omsbudsperson for long term care at either the continuing care facility she is in, or the local social worker, or the state health care department.  And if that didn’t work out in, like, a day, then I’d call for no emergency medical transport to the hospital.

The brain fog of Covid is real, and it’s serious.  The weakness of Covid is even more so.  Sounds like this person is lying in her own filth, starving, and very ill.  This is a job for medical professionals.

[Drama Llama]

3 minutes ago, Carol in Cal. said:

I agree with FaithManor, except I would start with the omsbudsperson for long term care at either the continuing care facility she is in, or the local social worker, or the state health care department.  And if that didn’t work out in, like, a day, then I’d call for no emergency medical transport to the hospital.

The brain fog of Covid is real, and it’s serious.  The weakness of Covid is even more so.  Sounds like this person is lying in her own filth, starving, and very ill.  This is a job for medical professionals.

She is not starving.  I make sure she has food every meal.  I call and order it and I call and check she got it, and brought it safely back to her room.  I just wanted this once for my brother to make that call so I could do something I planned with my kids.
 

She can get to the bathroom in the daytime.  She is not lying in filth but she does need a shower.
 

I will be there tomorrow.

[Drama Llama]

So, I am curious. @Mrs Tiggywinkle Again if you got a call for an elderly person who had Covid but was lucid, hydrated, normal temp and pulse ox but daughter was concerned about reduced mobility and hygiene what would be the outcome? 

[mommyoffive]

@BandH I have zero real world advice.  Just sending you some hugs.  I am sorry your brother did that to you today.  It sounds like he would have a much easier time picking up the work because he is closer, doesn't have kids, and works from home.  I would be really upset by that too.  Especially since you are on your way there.   I think having a conversation with him would be a good idea. But I don't know how much good it will do.  From today's experience of not following through on something really easy that he promised to do.  I hope that was a one-time screw up with him and he helps out more.

Safe travels.  I hope your mom feels better soon.

[Spryte]

((BandH)) I hope you have an easy trip to your mom and find her improved tomorrow. Maybe while you are there, if you have time, you could meet with the director of the nursing staff/health clinic there and ask about procedures for helping in a situation like this? They must deal with this type of scenario and maybe they have a plan in place?

On a practical note, my mother’s and ILs’ former independent living communities had handymen on staff to install any needed safety equipment, put together things that need assembly before installation, etc. They sometimes were able to help with electronics — like setting up wifi on devices like Alexa Show, etc (a great help, since we could drop in and see how they were doing on video). If you can get that number, and speak to whoever does that sort of thing, it might be helpful, too.

I, too, have a sibling who is unwilling (perhaps unable, at present, but for many years simply unwilling) to help. Other than a few offers to talk on the phone if I needed someone to talk to (and then offer advice that often just didn’t work because XYZ reasons that one would know if one visited, unfortunately). The golden child. Sigh. Fairness never once came into play, sadly. I just did and do what has to be done. Peace with that comes in fits and spurts. 

Edited January 1, 2023 by Spryte

[Drama Llama]

13 minutes ago, Spryte said:

((BandH)) I hope you have an easy trip to your mom and find her improved tomorrow. Maybe while you are there, if you have time, you could meet with the director of the nursing staff/health clinic there and ask about procedures for helping in a situation like this? They must deal with this type of scenario and maybe they have a plan in place?. 

I have spent lots of time on the phone with the nurse who oversees services in independent living.  They are clear that they won’t provide anything while she is positive, and that once we do the intake on Tuesday it could take weeks to start services.
 

As is Tuesday they will be back to weekly housekeeping and letting her go to the dining room, because she will be outside the window of contagiousness.

[Spryte]

Well, boo, that is disappointing. Your mom can’t possibly be the first resident in this position with relatives who live far away, one would hope they have better procedures.

It’s possible that a home health agency might be able to come in and offer more assistance. I’m sure you may have tried that route, but if not — maybe call a few options. Around here, they are private pay, and in the $24 - $30 an hour range.

I think you’ve done an amazing job supporting from afar. Sending big, supportive hugs.

[J-rap]

I only skimmed through responses.  Is your mother on Medicare?  They might provide home health care temporarily.  When my mother got sick (pre-Covid) and my father wasn't physically strong enough to care for her, Medicare sent a nurse and physical therapists to their home daily for awhile, including someone to help her shower, etc.  

Now my parents unfortunately live apart due to my mother needing to be in long-term care 24 hours/day (after several massive strokes), but my father is near her in an independent living apartment.  They are on the same campus (Presbyterian Homes), but PH has no obligation to care for my dad or even check in on him since he's in the independent building.  So when he got Covid (at age 94), I went there to spend a few days and nights with him, and then my sister stayed with him until he was well enough to stay on his own.  I was with him at his most contagious point and I did get Covid (even though I was double-masked around him), but because I'm younger and healthy and vaccinated it wasn't too bad for me.  My father was very, very sick, but he was able to get the monoclonal antibody infusion (which apparently no longer works for the current variants) and that turned things around for him pretty miraculously.  He was able to get completely back to his baseline.  Hopefully the Paxlovid will do the same for your mother.  

Three weeks ago, my mother (also 94 but fully vaccinated) got Covid in the long-term care facility.  She was tired for a few days with little appetite, but is now completely back to where she was before Covid.  Her facility allowed the quarantine to be lifted if by day 10 she had no more symptoms (even if she still tested positive).

Perhaps you can hire a home health agency after she's over Covid if it takes her awhile to get back on her feet.  It is pricy here -- $40-60/hour, but it is what it is.

I'm really sorry your brother isn't stepping up to help.  I think you'll just need to drop those expectations.  Life is unfair, for sure, but that's the way it is.  I don't know your history but I commend you for trying to figure this out even if your history was difficult.

 

 

[Mrs Tiggywinkle Again]

7 hours ago, BandH said:

So, I am curious. @Mrs Tiggywinkle Again if you got a call for an elderly person who had Covid but was lucid, hydrated, normal temp and pulse ox but daughter was concerned about reduced mobility and hygiene what would be the outcome? 

I wouldn’t transport if the patient was lucid and didn’t want to go, because to be honest, the ER isn’t going to care about reduced mobility and hygiene.  Those are kind of typical for a few days with Covid or any virus, and they simply aren’t going to admit for that(and Medicare/other insurance probably will not pay for an admission) because it’s not a medical need.

we do take people to the ER for “increased weakness” and “increased difficulty ambulating” but what usually happens is the ER determines the cause(rules out broken hip or things like that, checks for infections or viruses) and then generally discharged them back home with instructions to follow up with their primary doctors, especially if they may need PT or OT, or to start the ball rolling to get some caregiving help at home. In your mom’s case, they know the cause already.

[DawnM]

Are you flying out today?

When my dad got Covid this past July, that was the start of his spiraling down.   He went into the hospital for 11 days and then to rehab and never walked again.   But he had other issues which is what really caused the demise.   

I hope your mother recovers quickly.   However, I would suggest having a plan in place for when she will need more care because it is entirely possible that it is coming soon.

[Drama Llama]

8 hours ago, J-rap said:

I only skimmed through responses.  Is your mother on Medicare?  They might provide home health care temporarily.  When my mother got sick (pre-Covid) and my father wasn't physically strong enough to care for her, Medicare sent a nurse and physical therapists to their home daily for awhile, including someone to help her shower, etc.  

Now my parents unfortunately live apart due to my mother needing to be in long-term care 24 hours/day (after several massive strokes), but my father is near her in an independent living apartment.  They are on the same campus (Presbyterian Homes), but PH has no obligation to care for my dad or even check in on him since he's in the independent building.  So when he got Covid (at age 94), I went there to spend a few days and nights with him, and then my sister stayed with him until he was well enough to stay on his own.  I was with him at his most contagious point and I did get Covid (even though I was double-masked around him), but because I'm younger and healthy and vaccinated it wasn't too bad for me.  My father was very, very sick, but he was able to get the monoclonal antibody infusion (which apparently no longer works for the current variants) and that turned things around for him pretty miraculously.  He was able to get completely back to his baseline.  Hopefully the Paxlovid will do the same for your mother.  

Three weeks ago, my mother (also 94 but fully vaccinated) got Covid in the long-term care facility.  She was tired for a few days with little appetite, but is now completely back to where she was before Covid.  Her facility allowed the quarantine to be lifted if by day 10 she had no more symptoms (even if she still tested positive).

Perhaps you can hire a home health agency after she's over Covid if it takes her awhile to get back on her feet.  It is pricy here -- $40-60/hour, but it is what it is.

I'm really sorry your brother isn't stepping up to help.  I think you'll just need to drop those expectations.  Life is unfair, for sure, but that's the way it is.  I don't know your history but I commend you for trying to figure this out even if your history was difficult.

 

I have a home health agency all lined up to come in on Tuesday (day 11) and do their intake evaluation.  There is only one agency allowed to provide services in her building and that's the earliest day they'll come in because of the covid diagnosis, but they warned me it could take a while to get services going due to staffing shortages.  But waiting till Tuesday + "a while" is longer than I'm comfortable, which is why I'm going to go up for a few days.  Once that's set up, I feel like we have a long term plan.  She can stay there with home health care, and presumably eventually move into assisted living there.  It's why she chose the place.  

I think either the vaccine is working, or the paxlovid is working.  Her pulse ox and temperature haven't flickered.  She's just really fatigued and since her balance and strength were poor before (she used a rollator even in her apartment before this) they are, not surprisingly, worse now.  

[mlktwins]

2 hours ago, DawnM said:

I hope your mother recovers quickly.   However, I would suggest having a plan in place for when she will need more care because it is entirely possible that it is coming soon.

I agree with Dawn and also speaking from experience. She could fully recover back to where she was (I hope she does), but the reality may be that she isn't the same and you will need to start making different plans (or at least thinking about it and being ready). She fell and hurt herself. You don't know for sure??? where she fell or that she didn't hurt something other than her elbow. Once they start falling, they tend to lose some of their mobility and balance, are weaker, and will likely fall again. Whether weak from lack of eating, being sick, or just getting older and not moving the same, falls will happen unfortunately. And all it takes is one bad one to totally change the game for her and for you.

I just want to add that, in my experience and others on this board, you will probably have a hard time getting someone to come in for an hour twice a day. Most caregiving companies require at least 4 hours of time per visit (it needs to be worth their while too with travel time, costs, etc.). Just for reference, I am paying $25/hour for 24/7 care for my dad. That is actually cheap around here.

Regarding shared caregiving responsibilities with your brother, I have done it mostly myself for my dad while homeschooling twin high schoolers and helping with my in-laws until they died. I agree with @Spryte that fairness will not come into play. For me, I am doing it because it is the right thing to do and I want to know I did what I could for my dad even though he has made it super difficult these past 4.5 years. I need to be able to lay my head on my pillow at night, especially after he is gone. I have a lot of resentment about the whole situation, including too much time lost with my boys because of it, but it is what it is. 

There is possibly a plus side if your brother isn't involved (like my sister isn't with my dad). I get to make all the decisions and I'm not dealing with other family trying to say what they think is best and making things even more difficult than they already are. It is a lot of pressure on me, but I can't imagine having to argue and justify everything to someone else in joint decisions when it comes to my dad.

Who is POA? Who makes the medical decisions if she cannot? That will be an issue if it isn't you.

I wish you safe travels today and that you find her doing ok given the circumstances. It is a hard road you are starting to travel down with her. Keep your chin up and do what you need to do.