First time dealing with a parents medical issue - very tough (friend, siblings)

[mooksmom]

Originally Posted by metalmancpa

I have watched my wife suffer with the loss of family members. Her oldest sister lost her battle with Pancreatic Cancer six years ago when she was 50. A few years later, her mother passed away from the same thing. My wife was born January 2nd, her mother was born January 2nd, and her mother passed away on her 70th birthday on January 2nd. Suffice to say i don't care for January 2nd. But I was just there for support for my wife. It wasn't my sister and mother, so I had no idea the pain my wife felt.

Around six months ago I was noticing slippage in my 84 year old father. I worried about early dementia, so I finally convinced him to see a neurologist. She did an MRI on my Dad. I drove my parents to my Dad' appointment for the MRI results, and I came in to listen. The doctor suspected NPH, but she wasn't convinced due to my Dad being asymptomatic. She gave my Dad a choice - so EKG tests and other over time at the doctors office, or go to Beth Israel in Boston for a 24-hour comprehensive test. I gave my parents not choice - go to Beth Israel. Through various tests which was like driving down a dark and windy road, what my father had was Bacteremia (he had a serious blood infection) which gave him Osteomyelitis (infection attached to the spine, where falling could fracture it), and the infection attached to his Mitral Valve of the heart where he has had mitral valve prolapse for a long time. His leaky heart got permanently worse, and was high risk for a stroke. He was in a lot of back pain. In the week at the hospital, we were asked if he suffered a heart problem, did he want to be resuscitated. He was bed ridden for five days. He lost 18 pounds. In the weeks leading up to the hospital, the infection caused him to lose taste, and he hated everything about food as nothing tasted good at all. He was utterly confused as to his surroundings and reality. They finally put in a PICC line for antibiotics, and after the week stay moved him to a rehab center.

He's been in rehab for 2.5 weeks. He's gained some weight back. He's walking with a walker. The pain has subsided. He suffers lapses confusion, not knowing where he is, talking "out there". His dreams mix with reality. The surroundings of being in a strange place confuse him. The care is good and bad. He gets his physical, occupational, and speech therapy. Some of the night and weekend staff are just not that good. I go every day to visit. I came in once to him sitting in a bed after having a blowout. There was crap in two pairs of underwear, the sheets, his clothes, the floor. I was there 1/2 hour before I could get someone to take him to the shower, and clean the room. I was not happy.

Watching my father appear partially a shell of his former self is sad. He's struggling, and stuck in a strange and not so great place (I suspect most rehab centers like this are similar). A lot of this could be temporary, but until they stop the antibiotic treatment, we need to be patient. We'll evaluate his state of being then. I also have to help my mother. She's 82. She had a stroke a year ago but you'd never know it. It was a bleeder though, so any stress could risk another stroke, and the next one (if) could be devastating.

And finally, the "poor poor pitiful me" stuff. I have found it very difficult this past month with time. Here's a laundry list of my woes the past 3+ weeks since my Dad fell ill.
1. I go up every day to visit for anywhere from 2-4 hours. It's a 50 mile round trip for me.
2. I have at least temporarily taken over my parents daily finances.
3. I am a CPA in the heart of tax season.
3a. I am partner with my father-in-law who is semi retired and has been in Florida since Dec (he comes back next week)
3b. I have 2 offices, one 7 minutes from my house and the main one an hour drive (long story, but that's how it is right now).
3c. I have an administrative assistant and me, so right now I am doing a bulk of the tax work, and the corporate tax deadline is March 16th.
4. I lost track of how many hours I've spent snow removing. We've had multiple blizzards, and had 100" of snow in 5 weeks. Insane, and I'm the only one at home to shovel as kids grown up and out of the house and a wife physically unable to shovel (she's chronically sick with pain).
5. My wife has been in FL for a month with here Dad, so I've been home alone with no real support or help.

With that said, I do for my Dad what every son should do. I have one father, and he comes first regardless of those woes above, and I do it without any hesitation. But now for the first time, I am experiencing the difficulty with aging parents. I have a life of my own that takes up time, with only so many hours to spare. But in times like these, those thoughts go out the window. All I can do now is my best, whatever that is. If I crash one night without getting a lot of work done, so be it. Since my mother doesn't drive, it's why I go up every day so I can take her to visit. I'll be an aging parent soon to my two kids (I'm 55 in a couple of weeks), so I can only hope that I'm leading by example, which I'm pretty confident my kids would jump to my aid regardless.

Thanks for letting me vent. I guess I needed to dump this out of my head.

Bottom line is...you are mentoring your own children, who may be grown and away, but I guarantee are paying attention (unless they are early 20s, then...not so much). One day, not all too far down the road, it very well might be YOU in a 'place' and your kids taking time out of their busy schedules to come and be with you for a few hours (Harry Chapin's Cats in the Cradle playing in the background). It's life. No amount of money makes it better or worse. You can think you have planned for it, but mostly not...unless you can afford to pay a RN on 3 shifts a day to come and care for you when it happens. Most of us cannot. This is and has been our healthcare system for as long as I have been a part of it (1969) and now we have 10,000 of us Boomers aging out daily. Some of us will end up just like your Dad, who by the way is 84 when all this happened...pretty long life.
I thank you for writing because it shows me, clearly, how I need to get some paperwork and other 'things' in order for what is sure to come for me sooner than later. I still have a 20-sometihng son in college and cannot fathom him taking care of me 24/7 should something happen. I'm NOT going to any of those 'places', either. The one thing my son and I have always talked about, already because I am a RN, is end of life care and what I want and do not, so he won't be in the dark and do something awful like keep me hanging on. I did that because I saw families in ICU or the ER going through what you are now and never wanted that for him...or me.
I hope your Dad recovers fully and makes it back home. At least you have employment, in two places, to fall back on. Think about where you might be IF you had lost all of that in the Great Recession a few years ago.

[Briolat21]

Originally Posted by metalmancpa

I honestly can't possibly write a script of my own life right now. It just sounds too absurd, at least from my vantage point. What has occurred this past six weeks and beyond defies my own description.

Today was absolutely a horrible day, all the way around. To put to the top the reason of this thread - my Dad was mentally really off tonight, and bringing my mother to visit didn't help at all. She's all doom and gloom, he's just out there, and all I'm trying to tell everyone is to have patience. The PICC line may end on Monday, and I've said all along until the antibiotic treatment is done, we can't evaluate my Dad's mental state. He needs to detox a couple of days before we truly evaluate him.

In the meantime, the only reason my Dad's stay in rehab is covered by Medicare because he requires skilled care, which right now is only the PICC line as they stopped therapy (a gripe I have to deal with). He's scheduled to be released next Tuesday unless we private pay at $450+ per night. Therefore, since my Mom can't handle him in his current state, I need to go live in their house for "x" days to evaluate my Dad and see if he gets better.

So much more happened today on so many other fronts other than the above, I'm numb right now.

A lot of SNFs are corporate chain owned. A lot of them have their own "home" agencies. I would suggest that since you're already planning on being there for a few days, that you get an agency involved immediately -- at least to ease the transition for you and your mother. You may not need to keep them involved long term, but having that assistance (to develop a routine, overcome obstacles, learn what you need to know) might be very valuable.

At $25 an hour, that's $200 a day for 8 hours of care. Yeah, a lot of money, but it might set you up for longer term success.

And this is coming from someone who is not fond of agencies! But you don't have nearly enough time to try to find private pay, and your mother (right now) can't handle it. So you need help fast.

Make sure the Social workers from the SNF write all the equipment scripts you're going to need. You want to have those ordered and delivered to be there for your father upon his entry into his home. That means - walker; wheelchair; commode chair; hospital bed; etc..

If he needs those - the SNF needs to place the order. Trying to get them to do anything after he's discharged won't happen.

They should also be fully preparing/training you or your mother. If they're not and you have the feeling they're just kicking him to the curb - you can appeal with medicare (there should be a medicare ombudsman #) for more preparatory time. It would only likely be a few days, but if you feel you need it - fight for it.

Therapy in many of those places is a joke, and they stop prematurely (they claim you have to show constant improvement, but the standard was actually recently changed, and now proactive therapy to prevent regression is supposed to be somewhat covered).

If there's an outpatient therapy location nearby, they're usually more rigorous and many do better with visits to them a few times a week. Home PT is usually also fairly worthless. By the time they unpack and get your father up, their time is over and then they (also!) kick them out for lack of progress.

Mind you - this is just what my family has enjoyed, I'm sure there are some competent programs somewhere, I just don't think they're the majority.

You may have to ultimately consider Medicaid and a placement in an institution if your mom can't handle him at home, or they can't afford sufficient home care to help. Likely you'll need to help them with the applications as they are form-paperwork intensive. You can always employ an elder-lawyer to assist, of course that will cost something as well.

Again - so sorry. You're doing a wonderful thing helping your parents out. Recognize you're doing the best you can and don't go crazy over the little things that get dropped (because they will!). I sincerely hope your father improves.

[rdflk]

I don't recall what you said their financial and tangible asset situation is. But I'd definitely start thinking about asset protection, if Medicaid could ever be an issue.

[metalmancpa]

So many ups and downs.

Potentially my Dad is dealing with Delirium and not the more permanent Dementia. With that prognosis, it may take a couple of months for the symptoms to fade. But, it appears my Dad was hiding the infection (started exhibiting memory issues back in the summer but told no one), and it became very serious. Thus, the Dr said there is no way in telling what he'll recover to, meaning how much of my original Dad he'll be.

To compound things, he pulled out his PICC line. Yesterday's visit he was just a frail angry man and the visit was short. He thinks everyone is conspiring against him in some game. He told my mother since she's a part of it, the marriage is wrecked. My Mom has held up strong.

Very difficult times. Still trying to get through tax season while taking care of my parents financial, legal, and medical matters that must be current in this situation.

[Briolat21]

I hope your mom has friends and other support (not just you, though you seem awesome!) - and that you do as well.

Its good you recognize that your dad, while not apparently not demented (which is great!) is still not himself, and as such, you can't take the things he says to heart.

My father walked on a broken ankle for 3 months, thus compounding the original injury, and possibly contributing to the fact that the ankle ultimately never healed (after years + multiple surgeries) and he lost the foot, ended up bed-ridden.

He was a very independent sort, and just thought it wasn't serious. Turned out it was.

So - your father isn't alone in "hiding" issues and not wanting to worry or cause other people to bother/fuss. I think that's pretty typical, especially for the elders of this generation (the last of the great-depression people).

Keep venting as necessary, and keep dog-paddling. Eventually the flood will recede.

[metalmancpa]

Originally Posted by Briolat21

I hope your mom has friends and other support (not just you, though you seem awesome!) - and that you do as well.

Its good you recognize that your dad, while not apparently not demented (which is great!) is still not himself, and as such, you can't take the things he says to heart.

My father walked on a broken ankle for 3 months, thus compounding the original injury, and possibly contributing to the fact that the ankle ultimately never healed (after years + multiple surgeries) and he lost the foot, ended up bed-ridden.

He was a very independent sort, and just thought it wasn't serious. Turned out it was.

So - your father isn't alone in "hiding" issues and not wanting to worry or cause other people to bother/fuss. I think that's pretty typical, especially for the elders of this generation (the last of the great-depression people).

Keep venting as necessary, and keep dog-paddling. Eventually the flood will recede.

Thanks for your kind words. In all honesty I don't feel I'm doing anything special, but just what any capable son who happens to live 25 miles away would do. As I've previously stated, I only have 1 Dad, so when this happened I just did what I felt I should do. My brother, who lives less than 2 miles from their house and the facility, may visit a couple of times a weeks and helps my mother on Saturday to go food shopping. He really isn't equipped to deal with this.

My mother has no other friends or real support system, which is also why I do what I do, by taking her to visit 5+ days per week and help with little things when I get to the house. Just wish this didn't happen during tax season, but I don't think these sort of things plan themselves to happen when the whole world is available to help.

[Grasonville]

I won't bore you with the details but your situation is what we are going through now with my Mom. She was previously an independent living 87 year old. She had necessary heart surgery that took an unexpected turn so instead of a week stay it became almost a month in the hospital. She was also delirious at times (have them check your Dad for a UTI - it makes some elderly people crazy) and was shouting that she knew something was going on behind her back - we weren't telling her anything and so on. Two days after transferring to rehab care - her mind is 90% back to what it was a month ago. I never thought that person would ever exist again.
It is an ongoing process - that none of us expected to deal with or have dealing with it be like this.
I am lucky to have a cousin and brother who live closer than I do - and they have done the BULK of what needed doing this past month.
She is "supposed" to be discharged on April 10 - I am not looking forward to dealing with all the paperwork and authorizations and nightmare that is our eldercare system.
There SHOULD be a class we all take in our 40's to learn how to care for all this entails - but of course - the rules would change before we are forced to deal with it.
Wishing you all the best.

[Backintheville2]

Originally Posted by Grasonville

I won't bore you with the details but your situation is what we are going through now with my Mom. She was previously an independent living 87 year old. She had necessary heart surgery that took an unexpected turn so instead of a week stay it became almost a month in the hospital. She was also delirious at times (have them check your Dad for a UTI - it makes some elderly people crazy) and was shouting that she knew something was going on behind her back - we weren't telling her anything and so on. Two days after transferring to rehab care - her mind is 90% back to what it was a month ago. I never thought that person would ever exist again.
It is an ongoing process - that none of us expected to deal with or have dealing with it be like this.
I am lucky to have a cousin and brother who live closer than I do - and they have done the BULK of what needed doing this past month.
She is "supposed" to be discharged on April 10 - I am not looking forward to dealing with all the paperwork and authorizations and nightmare that is our eldercare system.
There SHOULD be a class we all take in our 40's to learn how to care for all this entails - but of course - the rules would change before we are forced to deal with it.
Wishing you all the best.

I agree with having them check your Dad for a UTI. My dad had a UTI which was discovered while he was in the hospital 3 nights before going into a SNF. A UTI can mess with dementia somehow and it turns them into a different person.

My dad is in a SNF 30 miles away, so we can't go every day. We try to go on weekends and have made it each weekend so far this first month. It is rough on mom and she has chosen not to go the past two trips. After the first 20 days (which Medicare covers), dad is covered by Tricare through day 100. We are in process of getting him qualified for Medicaid, as his situation appears it will be long term.

To the OP--hang in there and don't get discouraged. It is difficult and you will get physically tired. But you have to keep on going and do what you can. You seem to already be doing that.

[metalmancpa]

Back to the hospital in Boston. After pulling the PICC line, doctors were concerned about infection. Over the past couple of weeks his anxiety and anger have increased.

I go to visit him in rehab Friday morning. As I'm walking around the nurses station I see my aunt and cousin visiting. I get stopped and am asked if anyone told me my Dad was being brought to the hospital in Boston? Let's just say the next hour I was calling his PCP, talking to the head nurse, director, everyone. I was not happy not having been called. And my mother with proxy wasn't called. So here's someone with what we believe is delirium if not something worse, and they deem him competent to sign papers and make his own decisions when he exhibits such confused states? He was trying to kick nurses and slamming doors Friday morning. They moved the one on one nurse out of the room as well as his roommate for safety.

So now he's back in Boston, confused as ever. They want to look to see if another infection is in him. They want to determine if the PICC line needs to go back in. We all want to know what's going on.

Frustrating to the nth degree. And only 2 1/2 weeks until the end of tax season.

[Grasonville]

Call for an elder care advocate - check the UTI situation - be the PITA that gets all the system has available - do you have a Priest - Pastor - Rabbi? They know the right people to connect with. Thinking of you at this difficult time