caring for an aging parent in poor health?

[snoopy5386]

Where to start there is so much family drama........
My dad is 58, smoker for over 40 years and has COPD/Emphysema. He has good times and bad times. He still works a full time job but goes into the hospital between 4-6 times a year and misses work for 4-8 weeks a year. Luckily his job is very understanding. He was in the hospital two weeks ago with pneumonia and he was hospitalized and on a respirator following a minor heart attack in July. He has "attacks" where he feels like he can't catch his breath and starts freaking out. He has had them in the hospital as well and his pulse ox shows that he oxygen level is fine, so a large part of it is anxiety, of course he won't take meds for that. Right now he is home on oxygen and is in bad shape, he only weighs 126 lbs (he is 5'8"), he is having trouble eating because he has sores in his mouth as a side effect of prednisone he is on. He is very weak and can't make it around the house easily. He lives in a 2 story house with only one bathroom on the 2nd floor and laundry in the basement. He is literally crawling up and down the stairs right now.
Right now my little sister lives with him but they have been having huge blowout fights ever since he went into the hospital two weeks ago and she is not speaking to him at all, refuses to help him with anything and says she is moving out ASAP and "he is dead to her".
I live 3.5 hours away so I can't be of much day to day help, and it is difficult for me to run up there and stay for weeks at a time when he is ill. We were actually on vacation in Florida when he went into the hospital this time and by the time we got back he was already home. No one told me how sick he really was so I haven't been up there yet, but I think I am going to go help out next week. He has a sister, my aunt who lives an hour away who has been great, really taking care of him over the last few weeks. But she has her own life, her husband, she also drives to her son's house 2 hours a way to babysit her granddaughter and is gone 2 days a week doing that so I know she is really stressed about the whole situation as well. My mom divorced him 2 years ago in a very bitter divorce.
My dad is not an easy person to talk to, he is a real SOB if you know what I mean. He doesn't listen, is set in his ways, etc. He is not taking his health seriously enough. He is usually good for a few weeks/months but then stops taking some medications, smokes again, etc.

What the heck do I do now? What can I do from so far away to help? Anyone in a similar situation with aging parents who do not live nearby? I really have no idea how to handle this, but I know I need to do something.
I really need advice.
I am not ready for this and neither is he. He is only 58, he still has at least 4 years before he can retire and collect social security. I don't think he can work this long, his health is so poor. Two years ago when my parents divorced he bought her out of the house so he has a practically a brand new mortgage and the house is in poor shape. My mom also got half his pension in the divorce so I'm not sure of his assets.

 

[XYSRUS]

I'm going to start with a PSA first. Please, everyone, talk with your parents about what they want you to do in the event of declining health/end of life measures. When they are physically and mentally able, start to visit places and talk things over. I know it's uncomfortable but the alternative of making decision on the fly is more uncomfortable-for both parties! Now for the OP-You and your sister need to sit down with your dad and talk this over. Can you guys get at home help for him? Can he move into an independent care facility where there are no steps? How much money can everyone afford to contribute? What facilities are available around your father. This is a very tough time in both your lives. Your father is losing his independence and it makes him mad and you want to see that he is taken care of and that takes tons of time and money-BTDT! Talk, talk, talk and be prepared for some pretty heated conversations. And good luck.

 

[snoopy5386]

thanks for the advice. My sister isn't currently speaking to him so getting them to sit down together is quite impossible. I don't think he is ready for nor able to afford any sort of assisted living facility, he is only 58 and despite his health issues he could easily live another 10-15 years with his disease.
There is no easy way to say this, he has always dabbled in various "shady" activities and is therefore unwilling to have strangers come into the home to cook or clean, he might be ok with it as long as he was there with the person as well. What I am looking for is what things do others have in place to help care for their parents who are far away.
His doctors? Will they give information to me or do I need some sort of legal thing to make this happen?
What do others do with regards to errand running, grocery shopping, etc.
Does anyone use one of those life alert systems?
Ideally I'd like to see him sell the house and move to a small apartment but I don't know when this will happen. The housing market is so crappy now and the house is in bad shape, we would either have to sell it as is and lose lots of money or put thousands of $$ into renovating it first. Off the top of my head I know it needs a new kitchen, new bathroom, new carpet or refinish the floors, a new tile floor in the kitchen/foyer, major electrical work done (the entire upstairs runs on fuses), the whole house painted, etc.
Either way I can't really see him making a profit on the house. The neighborhood has gone downhill over the years.
I just don't know what to do.....

 

[RMulieri]

It is a rough road.Copd/emphysema patients are also really tough.Alot (not all) have been smokers all their lives and at that point where they are unwilling/unable to quit.It is hard to describe how a copd pt feels but..my aunt ,who is 48 a 2 ppd smoker and a copd /emphysema pt with home oxygen describes it as "trying to breathe thru a straw", you feel like you just can't get air.So that is why he gets anxious.Why he is getting 'Diffiicult' is because he has been a strong independent man his whole life.It is tough for anyone to suddenly be faced with having to be dependent and unable to do the things you usually do.I know on my aunts last hospitalization, she was flat out mortified she couldn't even shower or bathe herself without seriously having severe shortness of breath and fatigue.She compensated by being a PITA and mean to everyone, because she still had some control that way.AS for having to deal with ill and aging parents.I know your pain.I live 3 hrs away from mine, and have 2 brothers that couldn't be bothered( one lives 45 mins away) all their care falls to me.I did sit them down some time ago and had "the talk" about what they do and don't want, what to do if they are unable to care for themselves etc.I know you are probably feeling guilty and helpless and that is totally normal.But as mean as it sounds...you can't help someone that won't help themselves.What will eventually happen is he will be hospitalized, and may be unable to return home for issues with his care and safety.It is best to sit him down when you are all calm and discuss it now if you can.

 

[RMulieri]

thanks for the advice. My sister isn't currently speaking to him so getting them to sit down together is quite impossible. I don't think he is ready for nor able to afford any sort of assisted living facility, he is only 58 and despite his health issues he could easily live another 10-15 years with his disease.
There is no easy way to say this, he has always dabbled in various "shady" activities and is therefore unwilling to have strangers come into the home to cook or clean, he might be ok with it as long as he was there with the person as well. What I am looking for is what things do others have in place to help care for their parents who are far away.
His doctors? Will they give information to me or do I need some sort of legal thing to make this happen?
What do others do with regards to errand running, grocery shopping, etc.
Does anyone use one of those life alert systems?
Ideally I'd like to see him sell the house and move to a small apartment but I don't know when this will happen. The housing market is so crappy now and the house is in bad shape, we would either have to sell it as is and lose lots of money or put thousands of $$ into renovating it first. Off the top of my head I know it needs a new kitchen, new bathroom, new carpet or refinish the floors, a new tile floor in the kitchen/foyer, major electrical work done (the entire upstairs runs on fuses), the whole house painted, etc.
Either way I can't really see him making a profit on the house. The neighborhood has gone downhill over the years.
I just don't know what to do.....

You need to talk with your Dad.The time has definitely come to get this all squared away.You need to discuss what he wants,versus what is realistic.You need to address end of life issues now before it becomes necessary.Does he have a living will? He also needs to designate a person ( healthcare Power of attorney) to make his medical decisions for him if he can no longer make them for himself.I have discussed this with both sets of parents.They all have living wills and advance directives, and I am healthcare power of attorney.In my aunts case,she has the choice of assisted living or visiting nurses 2 times per week.You need to discuss options with your dads Dr and with your dad and any other family members.

 

[Tiggerish]

You might want to talk to a social security attorney or one of the groups that assists with social security claims. They would help him apply for disability now and you do not pay them anything up front. Once his disability is approved it is retroactive to the date he filed the claim and the attorney or agency gets paid from that money. A year after he is approved for disability, he can get medicare health insurance coverage and then he will have more options for assisted living.

 

[snoopy5386]

any other advice, I am heading up there on Monday to help out for a few days.....

 

[lntsmom]

I cared for an elderly aunt for 15 years...10 in my home and then 5 in a nursing home once her dementia got to the point where she wasn't safe to be alone. My advice stems partly from that and partly from having a neighbor who was a danger to himself and others and what the police told me to do.

First, check the phone book and see if your state (or the state your dad lives in) has an office that deals with the affairs of the elderly. If so, call and explain what is happening. Ask if there is any way to have someone go out and evaluate your dad to determine if he is capable of caring for himself.

Be sure to mention how he is unreasonable and hard to deal with. These are MAJOR symptoms of dementia. My aunt started by being horrible to me...other people couldn't believe such a sweet old lady would do the things I said she was saying. Eventually she quit bathing...quit worrying about making it to the toilet..etc. Those are all signs of dementia!

If they have this service available, they can make the call. If they decide he can't be home alone the courts will order him into a care facility of some sort.

If it's not available, contact the local Family Services office and see what you need to do to apply for him to qualify for in-home care. If he's a medicare patient he may be able to get someone to come in for an hour or two a day to help him.

My last suggestion is to call a hospital where your dad lives and ask to talk to their social worker. They can help you determine which care facilities will take his type of insurance. They may also be able to give you ideas of what to do if the above ideas don't work!

Good luck!

Added: Your dad's doctors cannot discuss his care with you unless he has signed a HIPPA release allowing them to do so. When you call, tell them you want to talk to them about what you are seeing so they will be better informed when making care decisions for him.

 

[The Moonk's Mom]

I don't have great advice, but I know what you are going thru. I have spent the last 5 years first caring for my MIL that had cancer then my FIL with COPD. HE WAS VERY DIFFICULT...I know where you are coming from there...I just wish you luck and hope that you find the answers you are looking for.

 

[tinkerlisa]

I can say that I know what you are going through. Up until last November(when she passed away), we have been taking care of hubby's mom for the last 5 years. There are three siblings and my hubby's sisters wouldn't help us one bit. His mom lived in assisted living for awhile but needed to be moved to a nursing home due to her declining health.
One sister refused to help us out on our last vacation. All we asked her was to be the one the nursing home called in case of an emergency. She said she wanted nothing to do with any of it and hung up! I am glad the other one said she would do it.
I don't have great words of wisdom except you are not alone! I wish you and your family the best.

 

[My Grandpa]

Hello and So Sorry ... but this is a common situation. I agree with the member who put the PSA (public service announcement) that "kids" need to work with the parents and start having those difficult future planning discussions sooner rather than later.

Fortunately for everyone, there is a great but little known resource out there: Area Agencies on Aging (AAAs), or Councils on Aging (CoAs). The term is interchangeable.

First they serve seniors 60 years of age or older at no cost and regardless of the individual or couple's income. Now dad is 58 but I am recommending this as an information and planning exercise for you. Get on the internet and for the county your dad lives in search both terms AAA and CoA. It shouldn't take you long to find the organization that serves his neck of the woods.

Check out their website and download any printable information about services that sound applicable to dad. On Monday, call the organization ... ask to speak to a Case Manager. Tell the CM your story. You are going thru this once in your life. CMs go through this hundreds of times in their careers - they know the issues, they know the arguments, they know the personalities, and they know how to work with difficult elders. They also know where the services are and they are a fabulous resource. Please understand that these are non-profit organizations and any donation now or in the future will be greatly appreciated. (End of commercial announcement.)

In my work life here in Vermont I work closely with AAAs and CoAs and their CMs. They are the best!!! And even though dad can't receive direct services from them for another less than 24 months ... you can get lots of information because, the days will pass and the need will be greater and you shouldn't be out there on your own searching for services.

All the Best!!!!

 

[CastleCreations]

I'm not a caretaker of a parent but I am a nurse with lots of patients that sound like your dad..I just want to send you lots of good wishes and best of luck with everything. It's hard when it's your family to see the whole picture and not get emotional. Please let us know how it works out...

 

[seashoreCM]

I'm going to start with a PSA first. ... How much money can everyone afford to contribute? :

IMHO it should be the other way around. How much can/would he contribute towards needed care?

If he is reluctant to have strangers come in to cook, etc. how about his paying a relative (not excluding you or your sister) to come over part time or every now and then?

By defining the payments as compensation rather than gifts, you avoid the problem of having all inheritable assets go to Medicaid should Dad end up in a care facility.

As far as fixing up the house goes, that too is going to need money and IMHO relatives should not be chipping in without being able to get "theirs" back ahead of Medicaid. Here a home equity line of credit or home equity loah may be the way to go although I would not disturb an existing low rate first mortgage loan.

 

[Belle & Ariel]

I am in the same boat.
Four years ago, DH got a job 500 miles away from our families. A year and a half ago, my dad got cancer. I went back often to visit and drive to radiation, doctors, shop, etc. I went back 5 times in his last 2 months.
We brought my mom here and she had a hard time--she had lived in St. Louis 80 years and did not give a change any chance. So she is back there wanting me to race back to take her shopping, etc. I go as often as I can ( I have 3 kids here) but no matter how long I stay or how much I go, I never feel I have done enough.
Would your dad be happy moving closer to you? My mom was not happy going from an assisted living facility into our home where our 3 kids have constant company, so I learned the hard way bringing her into our home was not a good thing.
I do think moving him into a condo or apartment is a good idea. Find one near a grocery store where he can walk to. My dad had a hard time getting groceries once he could not drive. I have a sister, but she just did not have compassion about helping and was not good about visiting.
I wish you the best. It is not easy to take care of aging parents when jobs take us far from home.

 

[AnnaS]

My dad is 78 and has COP. He is on oxygen and nebulizer and still refuses to stop smoking. He is also set in his ways. The doctors told him unless he stops smoking and drinking the home made wine, to not even bother going in for regular visits. His feet are so swollen, he has not shoes to put on.

He is lucky that my mom is alive and my sister lives downstairs. He also has myself, my brother and another sister close by (two other sisters live further away). I can't even begin to tell you the arguments that go on in the house. I feel sorry for my mom and sometimes my sister since they are right there.

Since your dad is alone - I would also look into private home care. Find a friend, relative, church, word of mouth and have someone go to him a few hours, two/three times a week - or whatever you and your sister can afford.

Two of my sisters actually do this privately because there are many people out there who are afraid of the "system", strangers coming in, etc. Some just need someone to check in on them, some need personal care (bath), some light housekeeping, cleaning and some just companionship. I hear their stories and they seem to do better with a stranger and not a family member - go figure.

Try to see if you can find someone for him. I feel for you. It is definitely not easy, good luck.