This is Me…

I had introduced Joe, but I think it’s time to introduce me.

I’m old now, a real card carrying member of the senior set. This seems strange to me… what happened to my life while I was living it? I’ve certainly been busy, too busy to notice what was going on with me. I’ve really been through a lot during my life and I hope some of that will come through these pages to help others.

I’m a daughter of an alcoholic. That alone sets your life up for struggles in the future. I was born late in my parents life, so by the time I graduated from High School my dad already had two heart attacks. Shortly after I graduated my mom started having strokes and seizures. Helping to take care of them set me up for the caregiving role. Yup, I started early. After dad had his first heart attack my brother had a bad car accident and his whole family (wife and two small children) came to live with us. My mom and sister-in-law got jobs in the evening at the same hospital, same shift, different jobs. So after school I had to come home, help my dad and brother and look after my small niece and nephew. Dinner (for all), baths and bed for the kiddies. Fetching and carrying for the men. After a year or two everyone got better, my brother and family moved out.

Once I was married I was still caregiving. Our first son was born a year and a half after we married and I took to being a mother and a wife naturally. I was already a proven caregiver!

My moms health slowly deteriorated over the years and my dad would call me to help with her, for baths and such. By this time I was working a full time job with two elementary age children. When mom went into the hospital (which was a lot) she would get agitated when she was having seizures so the hospital would call and I would go and sit with mom and calm her down. She died a few years after that and dad died three years later. I was in my early thirties.

Life kept rolling along until 1999 when Joe was diagnosed with his brain tumor. I’ve already told you what that was like (Introducing Joe), but the 16 years really took a toll on my life. Recovery has been hard.

Don’t think that stress and worry won’t tell on you later in life, cause it will. I tried to take care of myself spiritually and mentally while taking care of Joe, but let the physical go. To tell the truth, I was too tired to even think about doing more than brushing my teeth and falling into bed. Trying to get the minimum amount of rest and keeping my sanity and serenity took all I had. This last 5 (almost 6) years, I’ve spent trying to get my physical self better. It’s been hard and I have a long way to go.

If you are in the middle of your caregiving, try to take care of yourself. I can see now that I was too busy taking care of others to even think about me. It seemed selfish if I thought about it at the time, but I can see now, with 20/20 hindsight, that I should have been a bit more selfish. I don’t regret a thing that I’ve done except not doing more for me. That’s a regret that will stay with me for a while.

Find Some Help

When Joe’s condition worsened and he really needed someone to stay with him during the day I was starting to panic. I couldn’t stop working because at that time I was supporting not only Joe and myself, but also my son and his family. They helped with Joe and kept an eye on him, however, they had two young children that were autistic. This mix worked for the most part. My son and Joe didn’t always get along and the grandchildren were, well, children. They were noisy and messy. This caused some friction, but we got through it. My son and his wife were not really up to giving Joe a shower, for example.

After one of Joe’s hospitalizations the social worker at the hospital made an appointment to come over with a Department of Aging person. Now, Joe died at 58 so he wasn’t elderly, but, the Department of Aging also works with the disabled population. We live in Pennsylvania and I found out that PA loves her elderly and disabled. Through this talk I found out that we were eligible for home care aides and even a chair lift for the steps. Since they went by Joe’s income and not mine, we qualified. We received a chair lift (custom made for our steps) and daily aides that came in to take care of Joe’s daily needs. Joe wasn’t always happy with the aides (see previous post) but I was so relieved that I could count on someone to always be with him.

The help that these agencies can give you is different in each state. As I said, PA loves it’s aging and disabled but not all states do. One good place to start would be at your person’s doctor. See if they can refer you to a Department of Aging or other resource in your area. Just getting on the computer and doing a little research can help. In just a few moments I found Caregiver Resources & Long-Term Care on the Department of Health and Human Services page. Networking isn’t as strange as it sounds. You know, that friend of a friend that knows someone that received help from an agency. Keep your ears open and ask your friends and acquaintances if they know of an agency. If you are a member of a church, let them know of your need and someone there may know of a resource.

If you are in need of help, let someone know; a doctor, counselor, a good friend. Don’t keep struggling on your own. There are places you can go for help.

Anger and Frustration

What do you do with your anger? Our world has enough stress in it right now, adding caregiving on top of it creates a whole new kind of pressure. I know that I wasn’t the wonderful, kind loving person that the last couple of posts seem to paint me. I got plenty frustrated at Joe and it built into anger.

For example, we went through a lot of health care aides for a while. Joe was not very nice to these wonderful people who would come in and give him a shower, dress him and make sure he ate. On the whole, most of these ladies were kind, wonderful people. Joe would make them cry. He was mean. He’d call them names. I had one wonderful woman who would cry almost every night when I came home, but she kept coming back. Some of them didn’t.

He would tell them he wanted to wait for me to come home and give him a shower. We had done this for several years previously because he was mostly ambulatory but needed help in the shower. As his physical condition got worse he needed help to walk (fall risk) and get around and so we were able to get the home aides. I was working full time to support us, and by the time I got home, made dinner and then give him a shower, I was so tired. I was already running exhausted all the time and his meanness with the aides just put me over the edge.

I had already talked to Joe (nicely) about being nice to the aides. I had encouraged him to take his showers during the day so I wouldn’t have that burden with him in the evening. We’d had a lot of talks about this. He’d say he just didn’t like them or they wouldn’t take care of him his way (which was to leave him alone).

After the fourth or fifth aide had come and gone I lost it. I yelled. I hollered. I blew my stack. I told him straight out that if he made it so I had to quit work to take care of him, he would regret every minute I was home. I told him if he didn’t straighten up I would slam him in a nursing home and never visit. There was a few other threats, but you get the idea.

It worked. At least for a bit of time. We also got an aide who had a thick skin and wouldn’t take the “guff” from him. I thanked God for her everyday, she was that good. She stayed with Joe up to the time I did put him in a nursing home because his medical needs were getting overwhelming for me and for the aides and the Home Health Care Nurses were coming more and more frequently.

I know I shouldn’t have blown up on him that way, but what do you do with all that frustration that builds up? It’s so hard to get any time to yourself, but I’d manage an hour or two on the weekends and that helped. I also had a counselor that I could vent to and a couple of friends that I would talk to. My faith also helped to temper much of my emotion. I look back on this time now and I feel some guilt for acting that way. But we are all on a “Learning Curve” so to speak. Most of us are thrown into caregiving without warning and the “Learning Curve” is very steep. So, even though I know I wasn’t my best person at that time, I forgive myself for acting that way and move forward. It’s the best thing to do.

When God Blesses

Joe at Horseshoe Curve

We do a lot for the people we take care of, and as I said before I had this “bucket list” of places Joe wanted to see. One of them was Horseshoe Curve near Altoona, PA. Although this would normally be a day trip from our home (about a two hour drive) Joe’s condition by this time was such that a trip to the doctor was very tiring for him. He was such a train loving guy; he even had DVDs of trains that he would play during the day. So a three day trip was planned, two to travel to and from and one day to see “the Curve”.

I picked a weekend and after packing the car with oxygen and medical supplies, off we went. I did some research about the Curve and I really wanted Joe to see some trains when we were there. However, I found that there wasn’t any guarantee that a train would pass while we waited. I did find out that they have a “funicular” or a car that would take visitors up the side of the mountain to view the trains (yes, handicapped accessible!). We arrived and used the funicular (it’s really fun!) to reach the park that they’ve created. This whole time I’m praying for the Lord to send one train, just one train, please?

There wasn’t any trains for a while. We walked around (or Joe rode and I pushed) and looked at the scenery (fantastic) and the sign boards that gave a history of the Curve and the area. I’m still praying… I asked Joe if he wanted to leave, but no, he just wanted to wait.

And then a rumble came from the right and here came a train (thank you, Lord!) and it passed by and went to our left. Then there was another rumble and here comes a train from the left going to our right. I was overwhelmed with gratitude to the Lord. Joe was sitting there looking like a loon, he was so happy.

We were getting ready to leave when the ground rumbled again. This time there were two trains going opposite directions on two different tracks. They passed each other right in front of Joe. I was crying with joy by this time, but Joe didn’t notice, he was mesmerized by the trains passing in front of him. The noise was incredible!!

When the Lord answers my prayer and blesses us with such a small thing as trains passing by (and He really showed off!!) I know he hears all my prayers. Sometimes he can’t give us the answers right away, but in this case, He did. My trust in the Lord was so increased that day.

Happy New Year!

The steadfast love of the Lord never ceases; his mercies never come to an end;
they are new every morning; great is your faithfulness. Lamentations 3:22-23

Are you a person that makes new year’s “resolutions?” I used to be. You think that you are going to get a fresh start in the new year and you resolve to do your life differently. Sometimes it may be losing weight, exercising more, being kinder, a better person in some way or another. Well, I finally figured out that I don’t have to wait until a new year to start.

Take that verse from Lamentations at the top. The love of the Lord never ceases and are new every morning. Everyday we should strive to be a better person then we were the day before. We have 365 days to resolve to be something better. Starting today, resolve to make everyday a new start.

Taking Trips

Joe wasn’t much of a traveling guy. When his health was good he tended to stay home and not go anywhere. If I suggested a trip, he would say it was too much trouble. That changed when he had to be at home because of his health. All of a sudden he wanted to take rides and go out to eat. He had a “bucket list” of sorts. I would hear him say “I would like to go there one day” and I would make a mental list.

We took day trips to Strasburg Rail Road and Fallingwater in Pennsylvania while he was still ambulatory and not on oxygen. Now Joe had no idea what it took for me to arrange a trip. Just a day trip wasn’t bad, but one day I got the idea to take him to Ocean City, MD for a weekend. Joe was always a beach guy while I was mostly a mountain type girl. Ocean City is not in my top 10 places to visit. Since this was a bucket list type of thing, I couldn’t just get a room anywhere in Ocean City, we had to have one ocean side and near the boardwalk. It had to be off season cause we couldn’t afford several nights in the middle of the season. Joe was on oxygen and in a wheelchair for any distance so there were some special things I had to do. I got a room (handicapped accessible with shower chair) in a hotel on the boardwalk, ocean-side. I had to order oxygen to be sent to the hotel (ordered two weeks in advance!) which was delivered to the wrong hotel at first (heart attack time!!) but the concierge found it. Then the packing and the driving (over 2 hours) to Ocean City.

I have to say that it was so worth it. Although he couldn’t go on the beach, he loved to stand on the balcony and look out over the ocean. We walked up and down the boardwalk several times. While we were there we called his cousin in Rehoboth Beach, Delaware (just a “jog” up from Ocean City) and on Saturday we visited them. It was a wonderful evening.

All the work I did for these trips was definitely worth it. I’m praying the whole time we’re traveling cause I know anything can happen to make the trip a nightmare, but God always blessed us on these trips. It was one of the ways I learned to trust God and put my worries in His Hands.

Christmastime

The Holidays are a really hard time for those of us who are taking care of a family member. Always hovering over, being sure that they aren’t getting too stressed or tired. Trying to make this Christmas the best (will it be the last one?). That thought just brings the heartache to a whole new level.

Joe loved Mannheim Steamroller. He loved their electronic style music that was mixed in with the regular orchestra sounds. One year I decided I would take him to a concert that was being given about an hour away. Joe had no appreciation for the planning that it took to give him an outing like this. He just was happy to go. I wanted balcony seats so he could see everything that happened but had to be sure we could get there via wheelchair, making sure we had enough oxygen for the duration and be ready for any other variables that could happen. These trips always took a lot of planning.

But it was so worth it. Seeing his face while the concert was happening, the light show, the music was wonderful. I thoroughly enjoyed every minute, even though I’m not a huge fan of Mannheim Steamroller.

Here is a clip of Mannheim Steamroller in concert doing Silent Night. Enjoy!!

Don’t Quit

I have a poem in a little holder on my desk and it’s been an inspiration to me off and on during my life. When I thought of putting it up on this blog I wanted to credit the writer. Well, I found out that there are many persons attributed to this poem and most of the poems that I read are similar to this one, but not quite the same.

So… here is the poem but at this time I’m not sure who wrote it:

When things go wrong
as they sometimes will,
When the road you’re trudging
seems all uphill,
When the funds are low
and the debts are high,
And you want to smile,
but you have to sigh,
When care is pressing you down a bit…
By all means pray, and don’t you quit.
Success is failure turned inside out,
God’s hidden gift in the clouds of doubt.
You never can tell how close you are,
It may be near when it seems afar.
So trust in the Lord
when you’re hardest hit…
It’s when things go wrong,
that you must not quit!

Walking this Journey

You may recognize the “sign-post” that I have up. It’s the stages of grief. Anyone who has been to a counselor or therapist should know the stages. I joked with my counselor that I was so acquainted with them I knew them by heart.

You see, any loss be it a job, a move, any large changes in your life will kick in with some of these stages. We who are caregivers should be very well acquainted with them, indeed. We feel the grief when our family member is diagnosed with a terminal condition. They haven’t died yet, but we are already starting down that road of denial, anger, bargaining and depression. And while we are caring for our terminal family member, even if it’s for a short time, we may “move around” from one stage to another and back again. And just because we get to acceptance doesn’t mean we’re through grieving.

The one I got stuck in more than others was depression. That one is a killer. I read once that depression is anger turned inward. We can’t just be angry at the one we’re caring for so we stuff that anger and then feel guilty for being angry in the first place. I took a mild anti-depressant while taking care of Joe. I needed it so I could focus at my work and be functional in my life. I also went to a counselor, someone who is not judgemental who could listen to all my frustrations.

We all need an outlet for our feelings. Find someone, whether it’s a counselor, therapist or just a very understanding friend, who you can talk openly to. Someone who can listen to your frustrations and anger and not let it bother them. Someone who understands. If you need to use anti-depressants to help you get through your journey, because this is a journey, not just a little side trip off the road of life, then use them.

These stages are going to be a large part of your journey. Please find someone to help you walk through it.