They’re sick...now what do you do? This is the story and "how to guide" of my journey with my father beginning with his stroke, finding and moving him into an assisted living facility, and everything in between. This is not a clinical guide, but a real life manual of what to do, what not to do, and what to expect, because everything and anything can happen. Some is matter of fact, some is completely unbelievable, and all is true! After reading this book, learn two valuable lessons: 1. When the time comes, you CAN do this. 2. Keep your sense of humor along the way!

They're Sick ... Now What?

Keeping your sanity and your sense of humor while caring for your aged relativeBy Annette Marra

AuthorHouse

Copyright © 2010 Annette Marra
All right reserved.
ISBN: 978-1-4490-8940-5

Contents

Introduction.........................................................................................................ixI. They're In the Hospital ... I'm Going to Have to Kill Somebody!...................................................1II. Have the Talk ... No, Not the Sex One............................................................................9III. You'd Better Be Nice to Me, or I'll Put You Into a "Home"!......................................................13IV. "The Golden Years" My Eye - Goldtone at Best - You Know, the Kind That Turns Your Skin Green.....................17V. Location, Location, Location......................................................................................23VI. You're Gonna Need a Bigger Boat..................................................................................29VII. Fasten Your Seat Belts; it's Going to Be a Bumpy Move...........................................................33VIII. You Don't Need to Be a Superhero, You Need to Be a Delegator...................................................35IX. ... And They Lived Happily Never After...........................................................................37X. What You See, Is Not What They Get................................................................................43Some Helpful Phone Numbers and Websites..............................................................................47

Chapter One

They're In the Hospital ... I'm Going to Have to Kill Somebody!

It is imperative that your relative has a health care proxy and living will in place that makes sense. Most of our family members have their spouse or significant other listed as the decision maker. In most cases, that person is not or will not be in the best of health mentally or physically when a decision has to be made. The doctors legally do not have to talk with you. The relationship between the patient and care giver is crucial. I went through this with my father. The doctors would only speak to his wife, who by the way, is suffering from pulmonary fibrosis and is not getting enough oxygen to the brain. She is a very nice person, but her memory is not the best. I finally convinced her to have the doctors speak directly to me, and then I would relay the information back to her. There should be a law that transfers responsibility in the event of incompetence. Unfortunately, common sense on the part of the doctor is not a factor.

Each case is different, but each bears its own set of headaches. There were several doctors and each doctor had a purpose for a specific situation. Even though my father's wife told the doctors to speak to me, you might think that was sufficient - wrong again! Here's an example: one doctor in particular, I had left six messages for him to call me back, but to no avail. I later called the charge nurse, and explained that if I did not hear from that doctor by 12:00 that day, I would have my attorney attempt to contact him instead. I then let my husband know that we might very well have to get an attorney, since we did not have one. I thought he should have a 'heads up' to my threats.

And guess what? The doctor called me back. He wanted to know why I "had ants in my pants" about getting a phone call.

What should you do?

1. Tell the doctors you want a daily phone call, regardless if there has been no change. You might think you were asking them to donate a kidney by requesting this, but stay your course. You will be held responsible for making the calls; get used to voicemail, because you're going to be talking to machines, not people.

2. Write everything down. With all that is going on, your memory will become like a sieve - mine was prior to all of this.

3. Ask questions. No question is stupid - to the doctors perhaps it is - but not to you. Keep a list of every procedure and of every medication they are given. Ask why those medications are being administered.

4. When visiting them, bring a survival pack. I learned this one from the wife of the patient next to my dad. Disinfecting cloths, hand sanitizers, etc. are all worthwhile investments. The tray table alone is a breeding ground for all kinds of things. Don't forget to clean the phone and remote too.

5. Hire a nurse if needed. Yes, there are nurses; it is a hospital after all, but there is, in many cases, one nurse to 15+ patients. If your relative is in need of greater care, or you simply want eyes in the back of your head, (good to have), go online and search: "hiring a nurse or aide". You will need a registered nurse if you want their medication monitored; an aide is sufficient for overall care. Each state is different and so is care. I had to hire an aide for my sister in Florida when she went in for surgery, but that's another story.

6. "Patient Advocates" The literal definition is this: they act as a liaison between patients and health care providers to help improve or maintain a high quality of health care for patients.

That's great in theory, but the reality is that they really are a hit or miss proposition. Their services are usually offered when the patient leaves - go figure.

When my father returned to his room after having some tests done in the hospital, there was a business card from a "patient advocate" left with an offering of assistance. When I was having difficulties with my father's care: circulation socks, choking, communications with the doctors, etc., I called his patient advocate. After leaving several messages on her voicemail, she finally returned my call only to explain to me that my problems were not in her area of expertise; she then recommended that I speak to the charge nurse and doctors. The mental image: a puppy chasing his tail. When my father was discharged, there was another business card from her offering further assistance; I was still waiting on the first request. Perhaps their job is to "offer" assistance and hand out business cards - she was quite proficient at that.

7. Getting them home - Good Luck! Your wellness checklist and the hospital's wellness checklist are two different things. When I brought my father home, picture this scene: Him in a wheelchair, his wife in a wheelchair, feeding tube formula, diapers, and a half hearted "good luck" from the staff. To be fair, the nurses could not believe that the doctors were sending him home. He could kind of walk, so he was good to go in their eyes. Don't be fooled - insurance does indeed dictate care. My father should have been sent to a rehabilitation facility, but the hospital did not feel it was necessary. Try to fight this one; I did, but to no avail. It is quite costly to pay for a rehabilitation facility, let alone get them in to one. Try to find a doctor who will sign off on a Medicare covered stay in a rehabilitation facility. Currently, Medicare will cover 21 days in a facility for most cases.

8. Rehab facilities are also something that you need to "shop around" for. If the hospital or doctor recommends a facility, check it out for yourself. My friend's aunt needed a rehab center, so they went with the one the doctor suggested; logical enough. Rehabilitation centers are like motels: there are no-tell motels and 5 star plazas. There are several reasons a doctor recommends a facility; he might even have a piece of the action. My friend's aunt was admitted to a "no-tell motel", while several months earlier, his mother was admitted to the best of the best. Different doctors mean different facilities. Check them out beforehand.

You are on your own for the most part, so C.Y.A. (cover your butt). The more information you have, the better. The hospital will have nurses and aides and sometimes physical therapists come to the house, just double check that that is in fact the case. Keep in mind they are only temporary help, so plan ahead. Also, be aware that not all doctors will recommend that nurses, aides and physical therapists will come to the house. If they don't, be persistent and have your specific reasons ready to defend your case. Mobility is a major factor that determines Medicare or insurance provided home care, as is stability and whether the patient will be alone or have family members living with them. I told you this was going to be fun!

Chapter Two

Have the Talk ... No, Not the Sex One

A great deal of chapter one can be avoided if you sit down with you aged relative and discuss these issues. Don't kid yourself, you'd rather have the "birds and the bees" talk with them or donate a lung, anything but this talk. I suppose it's the circle of life. We are born, raised by our parent/ parents, move out, start a life of our own, and then the tables turn and we become our parent's caregivers. Ironic, isn't it? We come into this world in diapers, and leave in them too. This is the most horrific realization for them, let alone you. God willing, they will die peacefully in their sleep at a ripe old age, without sickness or incident. Unfortunately, that usually is not the case. If there are other family members available, that can help, but usually there is only one that will be dealing with the bulk of it.

Your relative does not want to face his or her own mortality - who does? But guess what? They need a plan. Every family was raised with some ethnic or religious "guilt" pre-programmed into their genes. Find yours and use it.

Explain that they should be "in control" (that's the buzz word, make sure you use it) and making decisions now, before their family members start making them for them, is key.

Here's where the "guilt" can be inserted. Explain that this would be a terrible burden for them to put on to their children. Be prepared, you've got a 50/50 shot here, it could go either way.

Find out beforehand what type of life insurance, if any, is available. I was calling policies my father had taken out in 1955. Some of these companies don't even exist anymore. Long story short, 4 hours on the phone later, and 5 cashed in policies later, $2000 was all that was available. That doesn't cover the cost of his cremation, which he has requested.

Find out what type of health insurance they have. If you like automated phone systems that don't recognize anything you input, press or say, you're all set. You need to set aside a minimum of 30 minutes per call. Anything less is gravy.

Learn their finances. You need to know what their income is and what their monthly expenses are. This is their money, not yours! And they are going to need every penny of it. Yes, they are spending your inheritance, as well they should.

Our UPS driver said that her 83 year old father has his wake, funeral and burial all planned out so no one would have to do it later. Don't be envious, most parents aren't that prepared. And trying to have a discussion about a pre-planned funeral arrangement can be detrimental to the ongoing process you have "undertaken".

Chapter Three

You'd Better Be Nice to Me, or I'll Put You Into a "Home"!

That is every parent's nightmare ... I shouldn't have been mean to my kids all of this time, because they will put me away. Unfortunately, all kidding aside, sometimes that is in fact the best place for them. They can't live at their own home anymore, now what?

This is probably the toughest decision to make, and each situation is different. My father was living with his wife in her condo, and she had taken a reverse mortgage to help make ends meet. The reverse mortgage was in her name only, which meant at the time of her passing, my father was out on the street. Since she is terminal and he is not capable of being on his own, neither was at their best, and needless to say, they were at each other's throats. Neither one was capable or willing to help the other. She would call me and tell me that "she couldn't take him anymore", and then my father would call me and tell me to "get him the hell out of there". I don't remember getting a degree in couple's counseling, but they seemed to have given me that title and job nonetheless.

My father was in a kind of "health purgatory". He was not well enough to live on his own, but not sick enough to be in a nursing home. What should we do with him?

Don't let guilt be your guide. Is he better off living with me or my sister? How can I put him into a "home"? He wouldn't put me there. (Well, actually he would do it in a heartbeat, but that's another book, isn't it?) You might think that it is your responsibility to have your relative move in with you and take care of them. After extensive article reading and research, that really isn't always the best fit. Unless you have a storybook or television relationship with your relative, he or she living with you might not be in their best interest. They need to feel somewhat independent and not dependent on you. Consider everyone involved.

First and foremost, consult with their primary care physician. They know your relative's health overall, mentally and physically. The doctor's opinion is helpful and matters. My father's doctor knew of his wife's declining health and he agreed that an assisted living facility would be the best thing for him. When your relative blames you for putting them in a facility, remember that the doctor was on your team - you never know, it could come in handy.

Assisted living facilities generally have one rule: no tubes or wires of any kind. That means oxygen, feeding tubes, or I.V.s. My father's feeding tube was removed several months before we began this journey (thank God); otherwise he would not have been eligible.

Chapter Four

"The Golden Years" My Eye - Goldtone at Best - You Know, the Kind That Turns Your Skin Green

They worked hard their whole life, and this is what they have to look forward to ... it's a hell of a thing.

Finding a nursing home or assisted living facility is daunting at best. You know that song: "M" is for the many things she gave me ... Well "M" is really for all of the money they are going to need.

Where to start:

Again, the internet is your friend. Search for "elder care agencies" on the net. You can search by county or city depending upon where you live. Some agencies serve several states. These agencies work on referrals and commissions that are paid through the assisted living facility. Remember, write everything down and everyone's names. Once you get started, a lot of places will start to call you even without your inquiries, so you must keep lists and names of everyone that you speak to. Let them know what type of monthly payment is affordable, and they will do a lot of the leg work for you.

Just give them money ... that's all they want.

There is only a handful, literally, of assisted living facilities that accept Medicaid. No one accepts Medicare. The ones that do accept Medicaid, for the most part, are restricted facilities: 3 people to a room, and 2 rooms to 1 bathroom. Nothing good is coming out of that situation, but don't completely discount it; that might be your only option. Assisted living facilities are expensive; your relative can spend upwards of $4000 a month to be a resident (they are called residents, not patients.).

These elder care advocates will shop around for you within their referral list, and let you know what facilities are in your relative's price range. Be prepared to fill up your gas tank several times; you'll be looking at a lot of different places.

My case was a little more complicated. My father only makes a little over $1000 a month in social security, no house, no car (he sold it to his grandson because the neurologist told him he wasn't able to drive anymore), no pension, and only a fraction over $19000 in the bank, and that's it kids. One of these agencies found an assisted living facility for $2000 a month; take my word for it, that's for free!

Through my assisted living tours, I learned of additional monies he was entitled to.

Uncle Sam Wants You ... to Live in an Assisted Living Facility

If your relative was in the military during wartime - they don't need to have been in action - the government has set up a veteran's pension used only towards assisted living rents.

What They Must Have: (each state might vary)

Less than $80,000 in the bank

Less than $13000 a year income (single)

A home

A car

The pension can range anywhere from $800 to $2000 a month. The assisted living facility will either apply for this themselves, or set you up with an elder care lawyer.

What you will need:

Every and any financial documentation: bank statements, CD's, IRA's, investments, and pensions Social Security award letter Recent tax forms and filings Military Discharge letter (they must have been honorably discharged - you knew there was a catch) Life Insurance Policies and surrender cash value letters Health Insurance: copies of all cards and bills A list from the pharmacy of all the medications and their costs Marriage Certificates and/or death certificates Social Security Card Birth Certificate And a gazillion more things

Here's the bump in the road. Your relative must be placed in an assisted living facility to qualify. The government wants to see the cost per month as well as the admittance papers. Speak with an attorney beforehand to make sure they are in fact eligible for this veteran's money if needed.

Remember what I said about having a plan? This is where long term health insurance would have been a Godsend. It's never too soon to start; it might even be a good idea to look into your own long term policy now.

A good many of these facilities have waiting lists. If you find a good place, grab it. If one becomes available and you are not quite ready, grab it. Timing is everything, and if you don't grab it someone else will. Waiting lists can be over 2 years. I had left a deposit to be put on a waiting list on a Sunday; that Tuesday, a room became available. We moved my father in that Sunday. It was much sooner than we would have liked, but remember what I said, "Grab it." This is an elder care facility after all, and anything can happen.

(Continues...)

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