Parkinson’s Disease sucks. There, I got that out of the way so we can move on now. My husband has PD. Many people believe it to be a “movement disorder” as the specialist for this disease are called. I want to cry out, “What about the psychological disorders of this disease? The autonomic disorders of this disease? The cardiac disorders of this disease? The dermatological disorders of this disease?”
Right now my spouse is considered “end stage” per our neurologist. He is a fighter, but he is confined to a wheelchair and becomes terribly stiff throughout the day. He has to be assisted with transferring from one chair to another and with all toileting. Thank God for external catheters as they have been such a blessing to us.
Last week was an excruciatingly bad week, but you try to keep your chin up even in the midst of a bad week, right? I went away for my birthday a few weekends ago for a break. It was great. Except I came back to a a spouse who has not only PD, but now a urinary tract infection (UTI). These benign sounding infections can be devastating. I’ve heard of others who have had them that actually went septic because they were not caught in time. In PD, the patient displays serious confusion and disorientation and the PD quickly shows signs of progression – this I’ve had to learn. About a month ago, my dear heart (DH) had a UTI so bad that it progressed to a kidney infection. This is serious and our GP said the emergency room should have admitted him to the hospital. Well, I’ll know next time and won’t let them send him home with me. He was so weak that he relied on me to move his 222 pound frame from one chair to another. Ahh, but I have digressed as I am prone to do.
After getting the UTI under control with antibiotics, my night time caregiver became sick Saturday morning and we woke up to him throwing up in the bathroom. We have to have night time caregivers as my spouse becomes so stiff he cannot roll himself over in bed, he wakes up thirst as he is a serious mouth breather, and sometimes he just needs to be stretched or have his feet massaged as they cramp. We sent the caregiver home early. He was able to come back the next day, but I had an unpleasant task ahead of me. I had to confront the caregiver.
My husband had seen the caregiver enter my bedroom upstairs (which had a closed door) while I was away. Now, all our caregivers know the upstairs is basically off limits as we need to have some “private quarters” of our own. He told my husband he was gathering trash (lie 1) when hubby asked him why he was in my room. Strangely enough, there was still trash in all my cans when I arrived home from my weekend away. Because we have caregivers, we have surveillance cameras throughout the house, so I could easily confirm what my hubby was saying. Yes, the caregiver entered my room, and yes, he stayed about five minutes – much longer than necessary to “gather trash,” but wait, he didn’t have any trash in his hands when he exited my room.
My husband sometimes has a different perception or memory of things or no memory at all of things. This is why I reviewed the tape, but his memory this time was smack on. I told the caregiver that my dearest had mentioned that he saw him coming out of my room. The caregiver said he was never in my room (lie 2). Now, this really bothered me as he was playing on my husband’s illness. He was throwing my husband under the wheels of the bus to protect his own hid. Is this they kind of person I want to watch my husband? Anyway, the caregiver said he was upstairs gathering trash, but never went in my room. Then I said we had video showing he entered my room. He said then (digging his hole deeper) that he just popped in and right back out (lie 3). I said, “No, you were in my room for around 5 minutes.” He then said he was just curious. I had said that I had a baby monitor to hear what goes on downstairs (where my PWP’s bedroom is) when I sleep upstairs about 3-4 nights a week to get much needed rest. He said he wanted to confirm that I really had a monitor and he knew that the room was “off limits,” but this made him more curious. Does this sound a little bit like Adam and Eve and the forbidden fruit?
We have decided to let this caregiver go and begin our search anew. It is difficult to find good caregivers. It is difficult to be awake 15-18 times during the night and then try to function during the daytime (me and my spouse since every time he wants something, now I am the nighttime caregiver). Luckily, this was only the weekend caregiver, so I trudged through two nights of little sleep and greeted our weekday caregiver with a big smile. It makes me appreciate him so much more – his steadfastness, reliability, and most, importantly trustworthiness.
We are advertising for new help with local nursing schools. We’ve decided we need daytime help as well now. We have a Hoyer lift that is gathering dust, as my DH refuses to let us use it, however, I fear it may be soon that we have to push this issue.
Life goes on, diseases progress, we get more wrinkles and become older, and we grow weary and want rest. Our hope lies in the future that we do have an eternal and everlasting, loving God to look forward to some day. A solid ground, not the cotton balls that I now walk on. I look forward to those days.
Especially lately, I feel as those I am only identified by the disease my husband has . . . Parkinson’s Disease. As it progresses and takes more of our time, I find that I have withdrawn from who I used to be and now have a new identity: Caregiver. This identity is admirable and needed and done because I love my husband. However, at a recent doctor’s appointment, the doctor said I should continue with my education and obtain a degree in the medical field. I quickly informed him that I had obtained a CNA certification simply to help my husband, it was by no means an entry into a new career.
Country Girl Meets Urban Squirrel 