Living long distance from aging parents

[GoVanGogh]

I probably shouldn't be posting yet, as I'm so scattered and a muddle of emotions but - here goes.

 

DH and I are from the same home town, but have lived halfway across the country for the past 20+ years. Our parents have divorced, remarried, divorced again, moved around that area, but still are in the same general area. Basically, we don't have a "home" to go home to. It is a full day drive to get there or a $1,000 plane ticket. Add in hotel expenses and trips home add up quickly.

 

DH and I knew that someday we would have to face the reality of our parents aging. DH's side of the family tend to go quickly. My side of the family like to linger and draw death out for years. So far, we have only gone through this with grandparents. DH and I have a different point of view, mainly because our own experiences have been so different. Now here we are with our parents.

 

My mom has been in ICU for the past week. I flew home and stayed at her bedside for five days, but I really need to figure out what to do from here - what is expected, how to navigate aging parents w/a stepparent thrown in the mix, etc.

 

My mom is only 65, but in terrible health (uncontrolled diabetes) and partially disabled.

She had a knee replacement surgery five years ago and refused to do the rehab after and then lost mobility in that leg. At that time, she was placed in a nursing home - by the hospital, not us children. She has always said she would rather die than go back to a nursing home.

 

She has been more alert the past few days and already refusing to obey the doctors and nurses. They need to get her to drink a bit of fluids and she won't drink anything but soda, which they obviously are not offering her.

 

The doctors are telling us if she were to get up today and walk out of ICU, she is looking at 2 months at a rehab/nursing home facility. But she has at least another week in ICU, followed by a week or two on the general hospital floor - then "months and months" (quoting her main doctor) at a rehab/nursing home facility. We have not told her this yet.

 

My parents divorced when my brother was a baby, but our mom only remarried 10 years ago. My stepdad lost his first wife to complications of diabetes. He is a sweet guy, but total enabler. Mom wants a candy bar, he would go out in a blizzard to get her one.

My sister and I were teens when our parents divorced and have a very different relationship with her than my brother, who grew up as an only child with a newly divorced mother. He is extremely close with our mother, while my sister and I have not lived with her (or even in the same community) in 30 years.

 

My sister lives two hours away, but just went through her own divorce and is struggling to get on her feet. She doesn't have time and money (or a safe vehicle) to drive back and forth all the time.

My brother and his wife live an hour away, but they have a large family and work full time; my brother also attends college.

 

My sister-in-law wants someone at my mom's bedside 24/7. As nice as that sounds, it just isn't feasible. I flew home for five days and hardly left her bedside. But I can't stay up there. Is it really expected that I do? I had so many relatives and family friends say, "Great! You are here. Are you staying for the duration?" :001_huh: Should I feel obligated to?? The cheapest lodging we could find was $60/night, so that adds up fast.

 

This is the first time my siblings and I have really had to deal with our parents aging... We are pretty clueless. And worried that this is just the beginning of a long road with our mom.

I would love any book suggestions, websites, BTDT advice, whatever. Thanks.

[TXMomof4]

I have no advice. My parents are youngish so I'm watching them go through the aging parents thing right now. It is awful and there is nothing I can do to help.

 

I suppose moving her nearer you isn't an option? How is your step-dad's health?

 

I wish I had some answers for you. :grouphug:

[Impish]

I think the first thing you need to do is set aside other ppl's expectations, and take an honest look at what is feasible for you.

 

You cannot, and should not put your family in financial difficulty in order to manage other ppl's demands.

 

Talk to your dh. Figure out what *you* are ok w/, in terms of time and money.

 

Why isn't your mom's dh at her bedside? If SIL wants someone there 24/7, then she should be willing to do so, not simply demand it of others.

 

It's a tough road, and I'm sorry you're walking it. :grouphug:

 

Best you can do is figure out w/your dh what works.

[J-rap]

Gosh, you bring on some interesting questions, and I don't know what I'd do in your shoes.

My situation is so different, in that I'm so close to my parents, and I'd go to their home with my girls and just live there for awhile, with my father.

I realize your situation is completely different. I, too, wonder if your stepfather can be there every day? You obviously cannot go bankrupt trying to support her yourself, and it doesn't sound like you are very close to her, AND you have several young children.

I think as long as your stepfather is there daily, and you can call her -- even daily -- that is a good support for now. If it gets very crucial again, you may need to consider making the drive or flying for another visit.

Other options would be to talk with her about moving to your town. I don't know if that's a possibility.

Otherwise, can you start planning a time when you can drive out and spend a stretch of time there, say for two weeks? That is, if you can stay in their home. Or if your brother is just an hour away, could you stay in his home?

[GoVanGogh]

I suppose moving her nearer you isn't an option? How is your step-dad's health?

I'm the only one that lives so far away. My mom has lived in the same general area all her life - all her friends and family live relatively close. It wouldn't make sense to move her here.

My stepdad is fairly healthy, but he is older and already has had heart problems. He is on a ton of meds for blood pressure and heart issues. Long-term, I would say his health isn't the greatest, but he is doing well at this time.

The more pressing issue with my stepdad is that he isn't "on top of things."

Ex: My mom had gone in to the doctor on a Tuesday and was dx with a sinus infection. By Friday afternoon, she was wheezing and incoherent. He tried from Friday afternoon to Saturday evening to get in touch with her family doctor instead of taking her to ER. Doctor's office forgot to switch over their answering service for the weekend and stepdad didn't think anything about the fact that he had left 10 messages with her doctor that didn't get returned. Sunday morning, he found her unresponsive. He still doesn't understand how it was pneumonia because it was only a sinus infection on Tuesday.

Just so many things they both could have done differently, but we really think stepdad should have been more proactive. How do you question that? And - as much as we love the guy - he just doesn't know anything about what we would consider 'basic health,' like - wheezing and incoherent are not a good thing!

 

Why isn't your mom's dh at her bedside? If SIL wants someone there 24/7, then she should be willing to do so, not simply demand it of others.

Stepdad was at her bedside, too. Just most of us felt that we needed to pull back some and regroup, maybe think things through better if we got some sleep and rested. She has such a long, long road ahead of her, we just thought it best not to crash and burn while she was in ICU.

SIL is willing to be by her bedside - and has been, but she is dragging all her children around - up to the hospital and around to different babysitters (they have a large family and have to find multiple babysitters). Her kids hadn't been home to sleep before midnight in over a week. Her kids were in trouble at school for not doing homework in a week. She was using up all her sick/vacation time on Mom when she really needs to think about her own immediate family. It was crazy exhausting just watching her try to be up there 24/7.

 

I think the first thing you need to do is set aside other ppl's expectations, and take an honest look at what is feasible for you.

Thanks. I'm trying to do this, but feel lost.

I think the unknown right now is killing us all. Having doctors say she has "months and months" of rehab, knowing that she was in such poor health prior to all this, knowing that she is going to have additional long-term health problems because of what happened. It just feels so heavy and unknown right now.

[GoVanGogh]

Otherwise, can you start planning a time when you can drive out and spend a stretch of time there, say for two weeks? That is, if you can stay in their home. Or if your brother is just an hour away, could you stay in his home?

We are trying to figure out a way to stretch out a visit for a few weeks.

I can't stay in their home. My mom is a hoarder and you can barely walk in her front door, let alone stay there. (Yeah. This would be a great time to gut her house while she is unable to say/do anything about it, but the thought of it is too overwhelming.)

Brother lives in a small home w/one bathroom and a large family. They don't even have room in their home for their own children. :tongue_smilie:

My in-laws live in the area, but they aren't able to take us in, either. All have moved/downsized over the years we have lived away.

[DawnM]

sorry

Edited March 16, 2012 by DawnM

[Zebra]

:grouphug: :grouphug: :grouphug:

 

You are responsible for your dc, and your dh, and yourself. Keep telling yourself that! Your job is to raise your child, and you entered into a marriage contract with DH. You have no such responsibility toward your mother. As mothers none of us want to admit that, but it's the truth. You also can't help it that you live far away, and can't be at her bedside 24/7 anyway. Ask me how I know (;)!).

 

Think about what you mother NEEDS. Does she NEED you at your bedside 24/7? No. Does she NEED you at her bedside all that much, or are there medical professionals taking care of her? She is not laying in a ditch somewhere. Would it be nice if you visited her some, absolutely. But sometimes, you can't even do that.

 

You really shouldn't feel responsible here. I totally understand that you feel bad about the situation, and wish you could do more, but you can't. It's sooooooo hard and here's another :grouphug: for you!

[datgh]

Does the hospital have a social worker you can work with. They have been down this road before with families. It might be time for a family meeting with the social worker present to help get everyone's thoughts on the same page. :grouphug:

[katilac]

What does s-i-l mean by wanting someone there 24/7? In the hospital, in the rehab, forever? Your mom might be in and out of hospitals and rehab for a long time, possibly years. When does 24/7 become impossible?

 

I was in a similar situation when my sister died, after about 6 weeks in the hospital. Overall, I'm glad we were able to have someone with her all the time, partially b/c it was so important to my mom. From a practical standpoint, most hospitals are understaffed, and they cannot always respond quickly. It's great to have someone there to get fresh water, or walk down to the nursing station to remind them in person that pain meds are overdue. And of course it is a comfort to the patient.

 

However, 24/7 for 6 weeks was brutally difficult, and that was with the advantage of a good number of people, some of whom didn't work or could be flexible, all of whom were local. The logistics of it are insane, and the guilt is constant: if a loved one is in the hospital, you want to be there, but the rest of your life doesn't go away, especially if you have kids, and especially if you have little kids. I don't know what I would have done if it had gone on for much longer, b/c my kids were spending too much time without mom, and no matter who they were with, that person was mentally and physically exhausted from being at the hospital so much. You feel like you shouldn't be thinking of anything but the sick person, but bills have to be paid, and work has to be done, and you need clean underwear at SOME point.

 

My advice to anyone would be to do the best you can to have someone there a substantial amount of the time. Don't make a big thing of having someone there 24/7, to yourself or to the patient. Some in the family were openly adamant about 24/7, to the point where a 20 minute gap between people was unacceptable. It made things harder than they needed to be, imo, at an already hard time. Running late was super-stressful, b/c I knew the other person wouldn't leave even if I was on my way. Very guilt-inducing.

 

I also don't think it was good for my sister. She got to where she wasn't comfortable when you went down the hall for more ice, and I think the constant emphasis on *never* leaving her alone played into that.

 

So, yes, do all you can for loved ones who are sick or old, but also give yourself some grace. Don't make promises. Be prepared with a response if your mom asks you herself to never leave her alone: "I'll be here as much as I can, but I can't promise that. There may be times you are here by yourself, but you will be fine. The nurses will be here to take care of you when we can't, but we will be here a lot."

[armymomma]

I am in a similar situation right now with an aging mother with mild dementia. She is a widow. I do feel it is my responsibility to take care of her as best as I can and also feel I am teaching my children something very important by doing this. We did decide to uproot my family this past year and move closer - 1500 miles closer - to help take care of her. My kids were not happy - but they are adjusting as kids usually do. I do sometimes have to make decisions about how much I expect my kids to sacrifice for my mom's wellbeing. It is a balancing act.

Either we need to help take care of her or she will have to go to a nursing home.

 

I am sorry I don't have many answers or suggestions for you - just empathy. It is so hard seeing your parents get old and become helpless.

Your mother does have her husband there with her though and though he is not maybe the best caretaker - he is her husband and sounds like they get along. She doesn't sound like she needs you 24/7 unless I am missing something. And you certainly can't go into debt - someone should certainly offer you a place to stay when you visit.

 

My mother was an older mother - not by choice - just how life happened. I never minded her being older because she was always young in spirit - but this is very hard.

[GoVanGogh]

What does s-i-l mean by wanting someone there 24/7? In the hospital, in the rehab, forever? Your mom might be in and out of hospitals and rehab for a long time, possibly years. When does 24/7 become impossible?

SIL says she wants Mom to "never wake up and be alone in the room."

But Mom is sleeping for 4, 5 hours at a stretch, then waking for a few seconds before drifting off. She may be awake for ten seconds, maybe ten minutes. But no pattern. The reality is: If you are with her for five hours and turn your back to get something out of your purse, you may miss that 'blink of an eye' that she is awake. Forget walking down the hall to use the bathroom or getting something to eat.

She also has no short term memory, so she doesn't remember anything from one wake period to the next.

 

She doesn't sound like she needs you 24/7 unless I am missing something.

I certainly don't think she needs someone with her full-time. I think she is getting incredible care at this hospital. But I'm not as emotionally attached to my mother as my brother and his wife are, so I tend to view this very differently then they are.

 

I was in a similar situation when my sister died, after about 6 weeks in the hospital.

:grouphug:

I am so sorry for your loss.

 

Does the hospital have a social worker you can work with. They have been down this road before with families. It might be time for a family meeting with the social worker present to help get everyone's thoughts on the same page.

Thank you. I had not thought about the hospital having assistance to guide us.

I know we had one nurse that was awesome, trying to lay out what the next few months will hold, but only myself and my aunt were there at the time.

 

If my dad dies first we are all in trouble. My mom is difficult to deal with, doesn't drive, won't get on a plane by herself, doesn't do a lot of anything herself. She doesn't use a computer, doesn't really even know how to use the cell phone.....

 

There is no way I can live with her, no way. She is critical, demanding, self centered, manipulative, and the list goes on.

That's my mom, to a T. :glare:

Scary thing is... She is just like her mother. And looking at my mom, laying there in ICU, unresponsive, she looked just like her mother. And her mother was in and out of the hospital yearly for 20 years until she passed. :001_huh: I know... Never trouble trouble til it troubles you... Worrying about tomorrow only takes strength away from today... Blah, blah, blah.

But the reality is - my mom is still young and she could very well have another 20 years this. And that scares me to death.

 

And you certainly can't go into debt - someone should certainly offer you a place to stay when you visit.

My family that lives in the area has downsized to the point that they don't have room. My family that has room all live 2-3 hours away, further than I really want to drive on a daily basis.

I think most people assume I would stay at my mom's house, but - due to her hoarding, which isn't known outside the immediate family - there just isn't space and it isn't safe.

DH and I have talked about getting an RV at some point, but for vacations - not this. That could be an option, but we are going into tornado season and they live in the center of Tornado Alley. Taking my family to live in an RV right now just doesn't sound wise.

[sheryl]

You will want to "confer" with the doctor on a regular basis. Actually b/t the siblings, the one who is the most logical in asking questions of the drs. re: your Mom. Then, that sibling keeps in close communication with the other siblings of changes one way or the other.

 

I'm trying to understand. Is your step dad alive? If so, he is the caregiver of your Mom. Now, if he's an enabler then you may want to discuss with doctors for a "plan". There are city/county services which may assist your mom, such as: housecleaning, meals, etc.

 

Now, if your Mom is on her own, it's really a consult b/t siblings and doctors as to how practicle and safe it is for your Mom to live alone. If not, then the sibling that is geographically the closest is usually the first pick for "caring" for a loved one. Otherwise, it would mean relocating your Mom to live with one of her children - reside in the same house OR reside in a facility in the same city.

 

We've been through this for a while now with my Dad and my dh's Mom.

 

HTH!