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[seventhyear]

I don't know if this is the right place, but can anyone share their insights about dealing with serious illnesses of family members and being primary caregiver to parents?

[testingthewaters]

Fourthyear, I am so sorry about your situation. This is very, very hard.

I wanted to bump this thread because I'm curious to see what kind of suggestions come up. I don't have any suggestions on being a primary caregiver, but I'm dealing with a sick parent at a distance and finding that hard enough.

I know a little about your family situation from what you posted the PA thread, and I hope you don't mind if I ask a few questions. From what I understand from your post, your father is seriously ill with a harsh prognosis that does not give him a lot of time. The plan is to treat your father where your parents live now, and eventually move your mother closer to you when the time comes. In the mean time, you have been able to take some leave. Just out of curiosity, are you able to go to where they live for some time while your father is being treated? How far away is that? Do you have an SO/children/other people or situations that make it difficult for you to be away from home for longer periods?

What kind of advice are you looking for? Practical advice on staying with your folks or traveling back and forth, on housing for your mom, or other practical things? Advice on getting work done in the mean time? More emotional support? Thoughts on how people deal with sick parents at a more emotional level?

At a more personal level, I'm in the middle of this myself and can't really give you much advice on dealing with the emotions constructively, or at least in a way that allows you to continue functioning. I'm having trouble with that myself. What procra said on another thread hit home with me, though: this sucks, and you will realize all kinds of new ways that it sucks in the future. She's right, it does suck, and acknowledging that was helpful to me in terms of giving myself permission to be seriously pissed off about how unfair this all is. That has allowed me to pick up work again, at least a little, though I'm still at about 50% speed. I have no illusions that my work is going to get better any time soon, but it is what it is.

Wishing you a lot of strength in dealing with all that is comming your way,
testing

[mountain_ivy]

Although my parents are old -- Dad just had a pacemaker implanted this week at age 88 -- they're in relatively good health.  What saddens me is the knowledge that at 88--89 next month -- Dad won't be around for more than a few more years.  His mother was 95 and only one of his brothers lived to 89, leaving just Dad and his younger brother, neither of whom wants to live longer than the other and be the last left. 

Sorry for hijacking the original question, which I didn't answer. 

OP-- I can only know a little of your pain and sorrow.  Hugs.

[yvesadeleharlow]

Fourthyear, I'm so sorry you're in this situation.  I don't know your specifics, but I can infer enough from your original post and the replies to say, firstly, get help!  Take care of yourself, too.  That's a cliche for very good reasons.

If you haven't already done so, contact one or more local hospice agencies for a consultation about what resources may be available to you and your family.  It is not necessarily the case that hospice is only for those people who have 6 months or fewer to live -- in many states and for many agencies, the only qualification is that the primary diagnosis is an "end-stage" disease.  That is, there are no further standard treatments available, even though the patient can expect to live longer than 6 months.   You may be eligible for home health care, respite care for you as a caregiver, and/or counseling to help deal with your stressful situation, in addition to medicines and supplies that your ill parent may require.  Even if your parent is not eligible for hospice, the case managers and social workers who do the evaluations will almost certainly be able to help you find support services that can help.  As a nurse, I've worked in collaboration with numerous hospice agencies, and I can't say enough good things about them. 

Good luck to you!

Yves

[seventhyear]

Thanks for the preliminary responses.  Here's a bit more info...

I'll be at my job at the U until the end of the semester.  Mom and Dad are about 600 miles away.  I'm struggling to keep it all together here at work.  Yes, I know I need to take care of myself, let the little things go, etc, but the reality is that I've still got to prep for classes, grade and be there for my research students.  I think I'm at maybe 60% on the first two and 30% on the latter.  I'm so disorganized.  I feel like I need a reboot and start over.

The next thing is trying to get my brain around not working for 4-6 months.

And I haven't even scratched the surface of Dad being sick, being impatient for treatments to start, looking into clinical trials and the huge reality of the fact that I'll likely move back with my Mom in tow and without my Dad in my life, and he's my biggest cheerleader.  Sorry about the run on sentence.

As testing the waters says, this just sucks.  On a selfish level, this was supposed to be my year to shine, last year before the tenure review, lots of cool stuff in the pipeline and now EVERYTHING is upside down - AND IT'S JUST NOT FAIR!

[testingthewaters]

Fourthyear, you are right, it's not fair and not going to be any time soon.

I feel you on the disorganization. Last week I missed two meetings, as in, completely forgot about the existence of these meetings, thus in one case a lost student stood in front of my locked office for who knows how long, and in the second case all kinds of decisions were made that I should have been part of but wasn't. That is so very not like me.

I was given the advice to give up on multitasking. This has been helpful. I figure out the bare bones of what needs to be done each day, with a maximum of 3 organizational things and 1 bigger research thing. This means that I am not getting as much done as I should. Nowhere near, in fact, and this causes me angst. But, the alternative (which I was doing before) is doing 30-50% of each individual thing I should be doing, which, in fact, got me nowhere. Nothing was ever done. Now, at least some things are done.

Give yourself time to deal with the idea of loosing your dad. You don't need to grasp that just yet. It is great that you can take the time off of work, I hope that this is helpful to you in the long run (and I feel that it probably is helpful to have the time and space to spend time with your dad and to grieve. I do recognize that caretaking, grief and grieving are individual, and that this is perhaps not how everyone deals with these kinds of situations. It is, however, how I would like to deal with it.)

You are allowed to be mad about the situation. From my perspective, having these feelings is not selfish. You had a plan, and it is not going to work out as you thought. You are dissappointed about that. This is logical. You are also taking a chunk of time off, putting your career on hold to care for your parents, and taking responsibility for the long-term care for your mom. This is clearly not the behavior of a selfish person.

[macaroon]

Hello Fourthyear,

So sorry you are going through all of this.

A good place to go for advice and counseling is Catholic Charities, either in your parents home town or in yours.  They have social workers in their ministry devoted to assisting people with elder care issues.  You don't need to be Catholic, and they'll do very minimal praying, and a whole lot of informing you of what options are out there for your parents. 

For those of you who are not yet "sandwiched", it really pays to bring these things up with your parents before they become ill.  My own parents (who are in their mid-50s) have been very blunt in discussing these topics with me and my brother, but my in-laws won't.  It is frustrating, because my FIL thinks that I can just get a job teaching at a college down near him if he needs us.  After all, it's less prestigious than the one I'm at now!  He doesn't get that it just doesn't work that way. 

[amlithist]

Fourthyear, how are you holding up?  {{hugs}}

[seventhyear]

 For now, OK.  I think I'm still in denial/too busy ending this term to really deal with it.  Reality is just around the corner when I get ready to pack up and head back home.  Still waiting to hear about the awesome sounding clinical trial.   Part of me wants to nag them, the other part doesn't want to hear that he's not eligible, so I'm not nagging them.

[rovingacademic]

I am doing this right now. Actually,I came to visit my parents in August (I lived in Europe) and have not been able to leave. I had to quit my job in Europe and get someone else to pack up my house, sell the car, etc. so I could deal with the situation that I found when I arrived here. My father had lost about 40 pounds since I had seen him last year and had a urinary tract infection that would not clear up. Two weeks into the visit and time to go home, I canceled my return plans (indefinitely at that point) and took him to the hospital. He has been there ever since. He has leukemia that my parents didn't tell me about so as to 'not worry' me. It makes me SO MAD that they didn't realize that an infection that won't clear up is because of leukemia! Rapid weight loss is because of leukemia! I am an only child and we have no extended family (my parents hate everyone) so it is all about me.

I have been very angry about all of this because I get no thank yous, only guilt for 'not doing enough'. My mother is going loopy on me -- she is disabled and not mentally stable at the best of times. I have another job on the other side of this country that I have to go to in January and apparently it is selfish of me -- you know, to not throw in my entire career for this. I will have to fly back at least every two weeks to manage this situation.

I have never been tremendously close to my parents and have found living in different countries the best for my happiness. Their social isolation means that everything depends on me doing everything. Plus they are hoarders so their house is a complete state, to the extent I had to live my friends' houses for 2 months before I could dig out a space for myself to live in.

So after all of this, my dad is palliative and has good days and bad days, with no hospital discharge date in site (and his only acceptable way of leaving is to go home and have my mother look after him, who can barely look after herself). I can understand having higher aims than a nursing home, but this is unrealistic.

So it really sucks. I'm glad I don't have the other half of the sandwich to deal with too.

And the next person who tells me to 'take care of myself'...you know quite honestly, taking care of myself just seems like another task to schedule.

[dellaroux]

Nothing like at the level you're describing, but my parents also "don't tell" things for months on end. They say they're doing it to protect me, but I've decided when people say that, it's really to protect themselves.....and their denial fortress.

1) One time, after visiting with them for a week, I called the next week to say "hi," and my dad said, "Oh, your mom got through the surgery very well."

"What surgery? Is she OK? What happened?" (I had just been there, no discussion at any time of any surgery had taken place.)

"Oh, she just had her pacemaker installed."

"And you didn't think you might tell me about that while I was there?"

"No, we didn't want to worry you..."  (!!!)

Likewise, falls and fainting spells have occurred, which I've only found out about after the fact. Once, getting there to see her with a huge knot on her forehead, I discovered that she'd fainted in the garage and hit her head on the car's bumper.

Once, it was by hearing after the fact that "no, it was OK, we went into the guard rail, your dad woke up and steered the car while I was slumped over the wheel..."  (!!!!!!)

She's since been diagnosed with Parkinson's, and had to sign away her driver's license to go on the medication (thank goodness...although it's really hard from the freedom perspective, they like to go places...)

And I'm 800 miles away, with few options to be there on any regular basis. I've set up a cab voucher system so they can avoid driving in bad weather, etc., that just hits my credit card automatically. I've talked with them (most recently, again, at Thanksgiving) about re-habbing the house to make it possible for them to live on the first floor (if each of the 4 kids put in 1000 or so, it would be doable)...and to consider assisted living down the road.

"What do you want for Christmas?"

"I don't need any objects. What I want is for you two to make some specific plans about either re-habbing the house or finding some alternative living situations."

"Yes, we should talk about that."

"Not just talk. We need to think about what to DO."

"Right. We'll consider it. Merry Christmas...."

2) Having worked in hospitals, I've also seen families huddled in the hall fighting over DNR (do not resucitate) orders. I don't want that for my folks, especially since one of the sibs, and possibly a second, have a very conservative view of things and might make a strongly resistant effort to buck appropriate care decisions through denial and quasi-religiously-influenced ideas.

I had spoken earlier with one brother, a member of a church/cult that I'm familiar with from having visited an avatar in my own area. He had originally agreed with me that we needed to try to get our parents to think and act more forthrightly about these issues.

Last time I was there (at Thanksgiving, again) we had a similar conversation, only this time it was,

"I've been thinking about the business of them continuing to fall." (My dad tripped on his cane at the airport when they went to pick me up; my mom had just fallen bringing in the flag after the elections at the beginning of the month...so both were sporting bruises...)

"Yeah, well, I've softened a bit on that from what we last said"

"How do you mean?"

"Well, I figure God's letting them fall in ways that really don't hurt them that much, so their angels must be doing a good job and maybe we shouldn't interfere."

"That's known as tempting God, and in Luke it says we shouldn't do that, it's a sin." (thank goodness for a knowledge of the language to use in these situations...even if I use it differently now.) 

"Yeah, that's true...well, maybe I'll think some more about it."

The other two siblings, when approached (per this brother's report, earlier) said, "But if they move out of the house, where will we stay when we want to come home to visit?" (!!!!!!!)

3) Thankfully, no one of these has developed into a terminal or traumatic situation yet, but I know that's always a possibility. I've also thought of moving home for a time, but that wouldn't work for several reasons. 

I've offered to take vacation time to help them clear things from the house, I've called one of their MDs, once, to alert him to falling issues that my parents apparently don't mention (even with the huge contusion on her forehead, I couldn't get my mom to go to the ER or her GP to have it checked for fractures, internal bleeding, etc.)

I'd call their minister for help, but they've changed churches recently, so no-one knows them at the new place and they wouldn't listen to the fellow from the old place (I counselled with him once, found him helpful, but they don't like the place any more).

They turned an MD-prescribed and Medicare-covered social worker away at the door, who had come to evaluate them for home health care. They don't want someone coming in to take care of them; had a housecleaner for a while and turned her out as well. (!!!!!!!)

I can and will call my mom's MD to mention potential for falling yet again and to ask if her medicine needs to be re-evaluated (the L-dopa has certainly made her better, but she keeps trying to do things like carry the laundry to the basement--tripping on the bottom step with no hands free to catch the railing--and doesn't want a small washer/dryer unit installed on the porch, which I offered to do.

I didn't realize when I began writing how pent-up this all has become.

Suggestions for where to start appreciated....

[msparticularity]

Rovingacademic and Dellaroux, you have my wholehearted sympathy! You're right; our society does a really terrible job at this stuff.

I think part of the problem is the lack of a so-called "continuum of care"--we have a sort of binary system, where either people have their independence, can live at home, and can make decisions for themselves, or they lose all their choices and get put into "a home." This isn't really quite the reality, of course, but it happens all too often, and it's definitely what a lot of people in our parents' generation saw happen to their parents and grandparents. Given that, older people can start making all of their decisions out of fear of losing their independence which leads to all of this craziness.

MrP and I are in the hiatus between dealing with his mother's aging issues (she died a few years ago after a very long decline), and the point when we'll have to deal with my parents, who are still in their early 70s. In the meantime, though, I'm trying to help my mom deal with her brother's situation.

My uncle is trying to care for my aunt, who has very advanced Parkinson's, all alone. She can no longer walk or do anything for herself, and also now has cognitive decline. The thing is, the damage done by Parkinson's also dramatically affects decision-making; it sort of gives the person very serious ADHD--a high degree of impulsivity and inability to think through consequences. So, my aunt keeps trying to get up and move around on her own, and falls, many, many times a day. She is always covered in bruises. Her wheelchair has a restraint system designed to keep her upright, but apparently she is able to slide out of it. Also, naturally enough, she wants to sit in regular chairs and makes my uncle miserable if he tries to resist.

My aunt also really doesn't sleep much--another effect of Parkinson's--so she keeps my uncle up all night, making continuous demands that he do things for her. He, of course, is a wreck, physically, mentally, and emotionally. Still, he's resisting any attempts to help them work out any different situation. The family is concerned that this is literally life-threatening for both of them, but they won't listen to anyone. And my uncle is fine, cognitively speaking, so making decisions for them is out of the question.

So, yes, it's incredibly difficult to be in this situation. We feel a strong obligation to help those who so clearly need help, but who resist any attempt to improve their situation. Legally, they still have the right to make their own decisions, but it also seems so clear that they don't quite have the capacity to make good decisions--argh!!!

[seventhyear]

OP here.   Glad to see that this thread is getting some traffic and helping some people.

In the past few months I've learned that there are far more resources out there than I realized.  Get in touch with the "commission on aging" in the county where your parents live and talk to them.  For specific issues like Parkinsons and Alzheimers there are also MANY local resources.  There are geriatric care managers, in home care groups, adult day care, local groups that will help shovel the walk etc. 

There's also support groups for caregivers, very helpful.  It is good to have a safe place to say how angry/frustrated you are.  Too many of us think that we should look like Mary Poppins while caregiving. 

I've been doing some reading too.  I've already learned a lot from books like "The 36 hour day" about my Mom's dementia, even though I've only read a couple of chapters.  Figuring out how to get decisions made and things done, while making your parents feel like they are still in control is tricky. 

The first trick may be to get the HIPPA waiver from your parents so that people can talk to you. 

I'm blogging a bit about my time on leave.  If you're interested, tune in to http://drupsidedown.blogspot.com/