I needed a little motivation to get back on here. My Dad was part of that motivation, and the other was my friend JaVonna (Layfield-UD Basketball?) I got a message from her the other day - she was just checking in. She's playing in Portugal now. (That just amazes me. I'm on a cell phone and we are talking like we are sitting next to each other. I will NEVER understand this.) Anyway, we talked a little about Melissa, a little about basketball. I reminded her that if she gets bored (which she must have been because she messaged ME) she could always read the blog. She said "I read the blog all the time!! But please!!! I need some more." So here I am JaVonna. This post is for you. Kind of. Actually it won't be very helpful for you right now, maybe in the future. But YOU motivated me to get on here again, and I thank you for that!
OH. And before I get on to CAREGIVING 101, I want to share this. JaVonna got a tattoo right before she left for Portugal to play basketball. She messaged me a couple of weeks before she had it done and told me what she was going to do. I'm pretty sure I knew why she chose B POSITIVE to be part of the tattoo - I asked her what the significance of the sunflower was. "The sunflower is a sign of positivity and perseverance. No matter the weather-or what it endures, it always shines brightly and it's always standing." She's a smart girl. I'm sure it's not easy moving to a different country by yourself. She needs to stay positive. B POSITIVE. Wish I could go see her play. Will miss her on the court at UD this year! Thanks JaVonna!!!!
I have been thinking about posting about this for a while now. I have been Dad's primary caregiver for the last five years. And WOW have I learned a lot. One thing I learned when I was Melissa's caregiver was I had a LOT to learn. And I learned from other people who were caregivers. So I thought I'd share some of that insight.
What I have found is that all I have to do is mention that I'm taking care of my elderly father and inevitably, if I'm talking to someone remotely close to my age, they are taking care of a parent too.
This post might not be for you right now. But it might not hurt to scroll through - might help you in the future if your parents are still young and healthy.
PRIMARY CAREGIVERS
I am not a professional caregiver-I don't get paid for what I do. But I am an EXPERT. I have been doing this for 40 years. Starting with the birth of my first child, Melissa Marie. I was 20 years old and had no idea what I was doing. I learned the hard way (like ALL moms do) by trial and error. By the time Nick was born, I knew enough that I didn't have to make as many calls to my mom or my mother in law. They were the professionals back then. I didn't know that THEN, but I know now that experience counts.
My biggest test was when Melissa was diagnosed with Breast Cancer. She was living with John at the time, and he was her primary support person, but she called me a lot, and eventually I became her primary caregiving (outside the doctors). I made the mistake of going to the internet for information. A good friend at the time (Deb R) advised me NOT to go to the internet....TOO LATE. I was already full of information that I didn't understand and scared me to death. Another friend (Pam B) introduced me to a friend of hers who was the Breast Care Coordinator for South Dayton.
(Sharon - I think she's retired now). She gave me her home phone, cell phone, pager, email address, and assured me that she would answer any questions I had, and if she couldn't answer them, she would get the answer! She was such a valuable resource for both of us.
After Melissa, my next big caregiving job was my Dad. That is what this post is primarily about - caregiving for an elderly parent. That's where I am now. And today, right now, I am totally overwhelmed. If you know me at all, you know that I keep journals - and I write a lot. It's cathartic for me. So instead of dwelling on my anxiety right now, I decided to share some of the things I learned on this journey. Helping others helps ME. So here we go......
CAREGIVING 101
I started this journey with my Dad about five years ago. He was living in Florida part-time, a snowbird. Until my sister Sue passed away. Then he decided he didn't want to come back to Dayton any more. Everything was good. He had a lot of friends in Melbourne-at the VFW, the local bowling alley bar. He loved to sing Karaoke, and have a few beers. He was very social.
Then he started falling. Six times in three months. The last time he fell, I got a call from his handyman, Brett, who Dad would call if something happened. This particular time Brett couldn't get there. So he called me. In Kettering, OH. "Your Dad fell and I can't get there". I was thankful for the call but had NO idea how to handle the situation. But I had to. So I call 9-1-1. Told them what was going on and they connected me with the Fire Department in Melbourne, Fl. I asked them to make sure Dad took his phone when (if) they took him to the hospital. Which they did. I was able to keep in touch with him since there was no phone available in ER. Then I made reservations to fly to Florida. It was my sixth trip in 3 months. (Drove a couple of times, flew a couple of times).
This time would be different.
While he was in the hospital, I talked to the Social Worker. The doctor was planning on sending Dad home at the end of the week. I reminded the SW that Dad had fallen SIX times in 3 months and something was going on that they hadn't figured out! He needed to go to Rehab to get stronger before he went home and I went home. It was then that the SW informed me that in order for Medicare to pay for rehab (at a facility), he would need to be admitted for 3 nights. I didn't know this at the time, but when you are in the hospital, you are "Under Observation" until they decide to admit you. You can be under observation for more than a night. She agreed that he needed to be admitted as an inpatient and that he would be there for 3 nights until he could go to rehab. She gave me the names of some Rehab facilities to visit (unannounced - the best way to visit. They don't know you're coming. You get to see how the patients interact, if it's clean etc.) I finally chose the facility closest to the hospital-since I was in from out of town, I knew how to get there and it passed my inspection!)
While he was in the hospital, the Social Worker also talked to me about his living arrangements. She told me he could no longer live alone. It was then that she referred me to an organization called Care Patrol. They help you find assisted living facilities. Rob Graham was my contact person. He was amazing.
Mind you, this all happened in two weeks time. I called Rob, he needed a LOT of information about Dad. Financial and otherwise. He wanted to meet Dad. Assisted Living facilities are all different. He wanted to find a perfect fit for Dad. Problem was, I hadn't told Dad yet that he couldn't live alone any more.
CHOICES
This is where CHOICES comes in. Dad wasn't ready to move out of his place in Florida. But he couldn't be alone any more. He wasn't ready to give up his independence either. I had to make him understand that it just wasn't safe for him to be alone any more. So he had a choice to make. Come back to Ohio, or stay in Florida. He had to be part of the decision. I couldn't make the choice FOR him, but I could give him his choices!
SAFETY/HAPPINESS
Your top priority when you are the primary caregiver is SAFETY first, then their happiness. There are a lot of ways to keep them safe. Being alone 24/7 unfortunately is not one of them. There are a lot of good Home Health Care services available. I found a good one (again, referred by SW). While he was still at home after one of his first hospital visits- they were coming 3 hours/day. Then 6 hours a day - 3 hours in the morning/3 hours in the evening. They were good, and he didn't mind them coming in, but eventually he needed more care, and home health care can be VERY expensive.
Another safety issue is driving. Fortunately for me, when Dad was released from the hospital to Rehab, the doctor would not release him to drive. He was in rehab for a month - but I knew that I was going to have to take his keys. He was an aggressive driver and his social life was going to the VFW and Bowling alley, having a couple of beers. He hadn't been in an accident, but I wasn't going to wait until he WAS in an accident. I couldn't take the chance that he would hurt someone. I talked to him about that, and of course his response was "I would never hurt anyone"....
It was a difficult decision, but besides the safety issues, he couldn't afford a car payment, car insurance AND Assisted Living. So I took his keys AND his car - back to Ohio. It took him awhile, but he finally accepted the fact that he wouldn't drive again.
You have a lot of difficult decisions to make as a caregiver. There aren't too many easy ones.
As far as keeping your loved one happy, there's not a lot you can do. They have to be part of that too. You can only do so much.
ADVOCATE
You are your loved ones advocate. You need to make phone calls, ask questions, make decisions. Be informed. Don't be afraid to ask questions. The squeaky wheel gets the grease.
DOCUMENT DOCUMENT DOCUMENT
Can't say this enough. One of the first things I did with Melissa was buy a spiral notebook (I bought the small ones that I could keep in my purse) Take notes at every Doctors appointment. I use the notebooks to write phone numbers, appointments, comments. Questions I want to ask so I didn't (don't) forget. I have a Composition notebook I use for everything for my Dad. The reason I recommend this is I KNOW where I can find what I wrote down. It's not in any particular order (chronological ) but I had to stop writing on pieces of paper that I had in my purse. I lose things too easily when there is a lot going on. (Now if you are a tech person- you might want to do a spreadsheet - Donny is getting all his mom's stuff together now and put it on a spreadsheet. Whoopty doo. It works for him. Mine is all scribbled in a notebook and I can find what I need. WHATEVER works for you. Just keep it all in one place.
Keep track of the all the time you are spending too. You might need that later.
LEGAL/FINANCIAL
Since we don't know when we are going to die, it's kind of hard to know when is a good time to start getting things in order. If your parents are retired, it's time.
I have decided that I'm going to make it easy on Nick. I already have a binder with all the information he will need when the time time comes. He won't be searching through drawers/closets/under beds/file cabinets for information. Although you find a lot of interesting things while your doing that. Like pictures. UGH. So many pictures. So little time. (we do have our pictures organized - thank you Donny - not in boxes. Nick will more than likely throw most of them away. That's ok. I won't be here.)
Back to Legal/Financial - if your parents (or you) are retired, it's time to start getting organized.
Donny is doing this with his mom now - it's a full time job! But getting it done early takes the pressure off if something happens.
Some of the things you should think about (I did all this in two weeks while my Dad was in rehab) - Financial/Medical Power of Attorney
A Will
DNR
Finances
If your parent served in the Military during wartime, they might qualify for VA Aide and Assistance. If you are interested in a number you can call to find out - message me. There are financial parameters, but it's worth looking into! Spouses may qualify as well. Every little bit helps.
PROFESSIONAL HELP/ADVICE
Don't hesitate to ask for advice or help if you need it. I would not (could not) have gotten everything in order with my Dad without the help of some professionals. Doctors, social workers, friends who have been there. You can't do this alone. It is overwhelming, but it can be done.
SUPPORT GROUPS
Ah. Support groups. Never in my life would I have thought I would need a support group. I am in multiple groups now. It's how I've survived.
You don't have to go to an "organized" support group. Start your own. When Dad first went into assisted living I was talking to a friend who was taking care of her Dad. I was a little ahead of her - my dad was already in AL - her dad was headed there. Then I was talking to another friend (my girlfriends from grade school-who I have reconnected with) who is taking care of her 98 year old mom. We started going to breakfast on Saturday mornings - a place that had a Bloody Mary bar. Not that a recommend drinking, but it helped us. We talked about how we were handling different situations, how we were feeling - and we talked about a lot of other things. But it was good to sit down with someone who understood! Unfortunately, we haven't gotten together in awhile. Our parents are all at the stage where they are requiring a lot more time, so we haven't been able to get together. I miss that. I NEED that.
Just yesterday I had coffee with a good friend whose mom is getting ready to move into assisted living. There are a LOT of us out there. We find each other!!!
THANK YOU'S
I would be remiss if I didn't mention the Professional Caregivers. (I am a volunteer caregiver).
The professionals are the ones who come into your parents/loved ones homes. They are the ones that take care of them at the facilities. The nurses (I wish I could name all the nurses that have taken care of Dad - YOU ARE ALL WONDERFUL!!!!! and Nurses Aides (YOU DO THE THINGS THAT I CAN'T DO!!!!! The people who greet you at the door. The people who work in the dining room. The Activities directors. The handymen. I can't thank them enough. At Victoria Landing in Melbourne - I wasn't there to visit Dad like I can here. You all made sure he was loved when I couldn't be there.
And now, at Traditions, I'm with some of you when you are with Dad. You love him like I do.
I know he is taken care of and I can't tell you enough how much I appreciate all of you!!!!
(He might not show it, but he appreciates you too. I wish he would use his button more!)
Take care of YOU!!!!!
And last but not least, take care of YOU. That is the hardest thing for a caregiver. In my honest opinion. Some days I feel like I am not doing enough. I want him to live forever.
But I also realize if I don't take care of myself, I won't be here to take care of him.
I wrote this blog post on my four mile walk this morning (in my head). I don't know if I remembered every I wanted to say - but most of it is here.
Take a walk, get a hobby. Have lunch with a friend. Write in a journal. Hell. Even go on a vacation.
Sometimes it's hard to get away. But you have to. You could go insane trying to do everything.
If you are one of the fortunate ones to have siblings that help, TAKE THAT HELP. If your siblings live out of town, find something they can do to help. A Power of Attorney does not have to live in town (Financial) - I have a couple of friends who take care of their parents affairs and they don't live in town.
If your siblings live in town, ASK THEM to help. A visit a couple of times a week is lifesaving. Literally.
You are not alone. There are a lot of us out there.
If you are a caregiver and have some advice, please post here. I'm sure I missed something. If I did and I remember, I'll be back.
In the meantime - Enjoy the good days!
OH. And B POSITIVE.
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