Tag Archives: Love

I’ve Been OFF the Ulcer Antibiotics for a Week Now

Day by Day with a Movement Disorder Posted on by 2

Well, I’ve been off of the PrevPak high powered antibiotics for my ulcerated lower stomach now for a week, and I am not feeling good at all. I had hoped once the meds were out of my system that my energy level would pick back up. But my stomach still feels heavy and sometimes there’s the same dull pain. I just don’t feel good. Nothing I can really describe … one of those you know it when you see it kind of things. I’ll keep on eating a little something with each dose of pills, and I’ll be calling the Gastro this next week for sure.

We had a very sad occasion at our church this week. Our Minister of Music passed away from kidney complications after his second heart transplant surgery. We did not go to the funeral, which was huge. He was well known all over the state from long time service in many churches and choir functions. I just was not up to the crowd. And I did not go to Sunday School today either. Our class is about half choir members, and I knew they would be so upset. I can’t handle my emotions at all any more, and it makes me jerk and shake when I get upset. So hubby came back and got me for church. It was a beautiful worship service, but as the Pastor said – Everyone was in a fragile state right now. I’ve never been in a church where a staff member died. It was almost like a continuation of the funeral service in a way, except more joyful. After all, we know he is well and happy now, although people close to him personally still grieve for his loss here on earth.

It does help to put my aches and pains into perspective, though. So I feel yucky. I can still get up and move around the house easily enough, and I can work on the computer as much as I like. I enjoy helping people on the Lost Toys Search Service, and it’s fun to get sales from our website and on eBay. I enjoy hearing from our children and grandchildren, and I have the most wonderful hubby any woman could ask for.

I am truly blessed by God, and I can’t thank HIM enough for all the blessings he has given me over my lifetime.

Getting Back to “Normal” and Doing Some Soul Searching

Day by Day with a Movement Disorder Posted on by 17

I didn’t have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I’m doing nothing!

I continue to limit my reading about Parkinson’s, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn’t do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer’s caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn’t go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I’ve gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I’m just being lazy, and dealing with a heavy dose of apathy right now. That’s the only way to explain that it’s easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby’s. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It’s one thing to read how they are doing, but quite another to see it for myself. I know that’s the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson’s people doing exercises. I haven’t watched it again. It does help, knowing that other PWP feel this way, too, but it’s not fair for those who are farther along, who are missing the support they need. It’s a reaction I’m going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that’s normal for everybody, right?

My Thanksgiving Prayer

Day by Day with a Movement Disorder Posted on by 4

This Thanksgiving will be our first without any of our parents with us. It’s the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It’s a reminder that as things change, they really stay the same. It’s a reminder of how very important family is. And how important friends are.

It’s also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am “the sick one” in the family. Parkinson’s Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I’m daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can’t thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Saying Goodbye

Day by Day with a Movement Disorder Posted on by 16

The Hospice nurse told me today that the nurse who stayed Saturday thought he had a heart attack that night. I had been guessing maybe two more weeks at the most, based on Daddy’s refusal to let me put anything in his mouth. She told me to be thinking more like days. I’ve said my goodbye’s, tried to finish the sentences he was struggling to get out, and he’s ready – well past ready. I didn’t have to hear the individual words to know the cadence of his “I wish this would hurry up and get over with,” as I’ve been hearing that for some time now.

Saying goodbye is never easy, but our first Hospice experience taught us that it is important. Even if you don’t think the person is aware enough to hear you, the loving words need to be said. And if they can’t respond, you need to speak out loud for them, saying what you know they would say to you if they could. Not easy.

“I Want to Go Home Now”

Day by Day with a Movement Disorder Posted on by 16

The human mind is a fragile thing when age or the onslaught of disease takes its toll. Since we’ve already been Care Givers for my mother and DH’s father, who both had Alzheimer’s, we’ve heard many, many pitiful pleas and angry demands for us to take them “home.” My Mama was in the hospital, with me there 24 hours a day for 35 days, recovering from a broken hip and going through rehab. She never could get straight in her head where she was, but I expected things to be better once I got her back into her own home.

I was very disappointed to find that she didn’t know she was in her own home, when we did get her back there. Each day involved question after question about when we would be leaving, why wasn’t I taking her home, who were these strange people, etc. No amount of reassuring her that she was home, and that the people were her family, would appease her. At one point she was in a panic, because she was worried about her dog being alone at the house, with no one to care for him. What could I say? She was remembering the house I had grown up in, and a dog I had as a little girl. So I had to play along that Cindy was being well taken care of, and for her not to worry.

We moved Pop out of his home, and moved him in with us. So his constant requests to go home at least made sense!

But I was not prepared to have these same conversations with my Daddy! He’s old – VERY old – but has been more or less lucid most of the time, even after he fell on Thanksgiving weekend. Well, he’s been lucid about everything EXCEPT that he was still in his own home! He’s forever asking me for his cap and jacket, so we can head home.

I’ve come to the conclusion that what they all mean when they ask to go home is to go back to a time when they were in control. A time in their lives when they had privacy. A time when someone else did not pick out the clothes they would wear, or decide what they would have for lunch, or when it was bedtime. A time in their lives when they could still drive, take a walk around the block, or, in Daddy’s case, cut the grass.

As Care Givers, we can do our best to keep them safe and comfortable physically, and we can even play along with their delusions at times, but the one thing we cannot do for them is to give them back that control over their own lives that they so long for.

My Daddy will be 102 in less than two weeks. His body becomes noticeably more frail each day, his speech has become all but nonexistent over the last few days, and we can get very little nutrition or fluids down him. It frustrates him to try to talk when he can’t get the words out. He can no longer help us when we turn him in the bed. His days and nights are spent for the most part sleeping. Sure he wants to go home. Who wouldn’t want to return to a better time??

I both rejoice and am deeply grieved that he soon will be truly HOME. Seeing my dear Mama again. Walking with a full strong stride. Enjoying seeing all the wonderful sights that his blind eyes have been missing for many, many years. Hearing the angelic choir in all its glory. And I betcha he’ll be on a riding lawn mower keeping the yard cut!!!

I’m already grieving his loss. Just writing these last words has the tears flowing. But he’s lived a long life, with much to be proud of and to enjoy. It’s time for him to go home.

I’ve Lost Christmas!

Day by Day with a Movement Disorder Posted on by 10

Ya know how sometimes it’s too warm when you should be Christmas shopping, and it’s just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn’t help the situation any, but that’s not really the problem. It just doesn’t feel like Christmas to me this year.

We’re not going to see either of our daughters or their families this weekend. We didn’t decorate our house, because we haven’t been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy’s living room, but that’s it. Our only Christmas shopping was over the internet, so we haven’t been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I’ve even missed all the Christmas programs at church.

Oh, we’ve had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn’t feel magical this year. And that’s very depressing. There, I’ve said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that’s all I’m doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson’s.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn’t happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It’s hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It’s a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

Arrangements Are Made

Day by Day with a Movement Disorder Posted on by 2

I talked to Frances last night, and she can stay late Friday evening, in case traffic runs us late getting home from the doctor’s, and she can stay with Daddy on Tuesday. So I’m all set to keep both of the doctor’s appointments. I’ve been doing a lot of searching on the Internet, and it looks like the Insomnia is just another one of those Parkinson’s symptoms that a lot of people get, but most people don’t know about. Let’s face it. The only thing most people know about Parkinson’s is that you shake, right? And I don’t even do that! LOL!

My dear sweet hubby went all the way to Birmingham yesterday to grocery shop, just so he could get me some Soy yogurt. I was rationing the little bit we had left from our last stop in town, and he knew it. So now I have enough to have one every day for awhile. They’re full of cultures, taste good, and my tummy doesn’t complain. That’s a good combination for me right now.

God gave me an angel in disguise when I “found” this wonderful man. We met at church, too! He’s a gentle soul, who would do anything in the world for me, and I feel the same way about him. We’ve been deeply in love with each other for 46 years now, as it was surely love at first sight when we met. I can’t even write this without getting tears in my eyes, just thinking about him.

God has been so good to us, with two wonderful children, two fine son in laws, and three great grandchildren. I need to spend more of my time being thankful for all the blessings in my life, instead of dwelling on my present discomforts.

I think about all the horror stories on the evening news, with children being beaten to death by their own mothers and put in microwaves, and it makes me realize how very fortunate I am to love and be loved by so many family members. I take so much for granted, and that’s a sin that I need to repent of and make a conscious effort to cleanse from my life. Thank you, God, for your very near presence with me today. Amen.

Am I in Denial?

Day by Day with a Movement Disorder Posted on by 2

We had our usual Date Day yesterday, and had a good time, as usual. It was windy and cold, and I was bundled up. DH was in short sleeves, enjoying the brisk fall weather. We’ve always been at opposite ends of the hot natured, cold natured spectrum, and it looks like the PD is just going to make that worse :).

We found a few good buys, but at one of the estate sales we found one of those deluxe model walkers with the padded seat and all the extra pockets that really looked brand new. The daughter selling everything said her mother had only used it a few months, and that’s exactly what it looked like. She didn’t want much for it, as I’ve been pricing them, and I knew it was a good buy. So, even though I don’t need it now, we bought it.

As we paid for it, she made some remark about how I was going to enjoy using it, and I replied that I couldn’t really say I would enjoy using it, but I knew that I would eventually need it. My DH went on ahead to the car, so he could figure out how to pack it away, and when I caught up with him, he had tears in his eyes. I, on the other hand, was totally unaffected. When I asked him about why he thought it was bothering him so much more than it did me, he answered that maybe he loved me more than I loved myself.

That’s a load to think about for sure! It did get me to thinking that maybe all my “busyness” reading about Parkinson’s and writing this blog is somehow a way to block out my emotions about it. I don’t know. All I do know is that for right now I’m honestly not upset by all this. It’s certainly not because I haven’t read about how horribly debilitating it can become, because I’ve read plenty of that. All I know is that I’ve laid it in God’s hands, and I’m trusting Him to make the best of whatever happens. I do pray daily that my DH will find some peace about this whole situation.

My Wonderful Christian Family

Day by Day with a Movement Disorder Posted on by  

I’ve been overwhelmed by the amount of concern that the people at church have shown to me since they have found out about my diagnosis. I’ve always known that our church members were particularly loving and compassionate when someone was sick or there was a death in a family, but I’m seeing it directed at me this time. We’ve recently had a greatly loved church member die of complications from Parkinson’s, which is probably why everyone has been so solicitous, too.

All I can say when they say how sorry they are to hear about the Parkinson’s diagnosis is that it’s OK, because that’s really the way I feel. I just haven’t gotten upset about it. I’m not saying I won’t at some point in the future, but for now, God’s GRACE is holding me steady.

I did have a chance to talk to the other person at church who has PD last night, to see if he had trouble with his stomach when he started on the meds. He didn’t have any problems at all, which I’m glad of, for his sake. I already had a very touchy digestive system, having just finished a long bout with colitis, so it’s not really surprising that the meds are giving me trouble. At least we’ve finally had a chance to talk, and it feels good knowing there’s someone I know who is going through the same thing I am, even though he’s much older than I am. He’s been on meds for five years already.

Telling People I Have Parkinson’s

Day by Day with a Movement Disorder Posted on by 6

Today in Sunday School I told my friends that I have Parkinson’s. There were a few gasps, and a few saying at least now I know what’s wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.

We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there’s anything more I can do, I will do it. And above all, I know that God loves me.

I’ve already told my dear sweet hubby that I don’t expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he’ll be doing it by himself, so there’s probably going to be a point where he just can’t do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I’m going to be praying a lot for him, that he will be strong through all of this. I love him so much.