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By punky On 2008.12.29 10:45
Iím going to ask you to forgive me for rambling on and on and at times, perhaps not making any real sense to you in your particular situations. My recent experiences with the well meaning but often-unaware health care professionals in hospital settings has been a real eye opener for me. I might even go so far as to define it as an epiphany!

John and I have been two of the lucky ones dealing with Parkinsonís. He is now 9 years into his original diagnosis and his symptoms have progressed slowly but thoroughly over these past years. His gait and balance have been the major manifestations of his disease until this past year. These impaired functions have been coupled with increasing confusion and inability to express much of anything clearly. This made it particularly difficult for those of us who love him and need to care for him. We were always guessing at what he wanted. His apparent lack of any emotion or response made this pretty tricky. He lives pretty much in his own little world that none of us could enter. And herein lies one of the major problems.

Itís hard making decisions for someone else. Itís hard enough to make good ones for ourselves much less to be responsible for a loved ones well being. Itís somewhat like trying to explain to a tantrum-throwing toddler why he canít do exactly as he wants. Sadly, this disease often forces us to make the difficult choices for loved ones unable to make their wishes clear to us.

John went into the hospital for what was a routine battery change in his pacemaker; supposedly in-in the morning and out-in the afternoon. Because of his Parkinsonís the doctors decided to keep him overnight for observation. Ok so far. He was home and doing quite well for the first few days following surgery. In a day or two I noticed increased swelling, redden and a discharge through the incision. Back to the emergency room of our local hospital where the site was cultured and diagnosed as being contaminated with the dreaded MRSA bacteria. This virulent strain of staph has become immune to antibiotics. It presented a life-threatening disease for John and he was transferred to a large city hospital where they specialized in infectious disease control. They needed authorization to remove the pacemaker from the infected site, lavage the wound, and administer a long-term select and universal IV antibiotic. I signed the authorization and the long nightmare continued.

Whether from age related senility, new environment syndrome, Parkinsonís dementia, drug induced confusion or some other God-awful complication, he remained in an agitated, anxious, delusional and hallucinating state for the next 3 weeks. He was finally discharged to a sub-acute care facility for intensive physical, occupational and endurance therapy where he stayed for the next 3 weeks. He was given seroguel and valium to calm him and things seemed to be at least under control. He was able to recapture some strength and endurance but he wasnít out of the woods yet. He developed a violent and angry rash all over his body Ė a probable allergic reaction to the long-term antibiotic (Vancomycin). Prednisone was prescribed to relieve the awful itching. He immediately spiraled down to a renewed state of extreme psychosis and was once again transferred out of the sub-acute care facility back to the hospital where he remained for 2 more weeks. He is back to square one in weakness, confusion, and has lost the ability to put one foot in front of the other. He now is awaiting yet another transfer to the rehab sub-acute care facility to work once again on regaining strength and hopefully some degree of independence so we can care for him again here at home.

Itís been a nightmare and a roller coaster ride. I share this not to frighten anyone but to alert everyone to the unforeseen consequences and possible dangers for our compromised Parkinsonís loved one.

And now I begin the next phase of the battle, trying to figure out how to pay the astronomical bills that keep coming from the many, many doctors, laboratories, hospitals and services that followed the first ď routine battery change.Ē

By rajenriver On 2008.12.29 15:36
Praying for lots of extra strength for you and John! Wow, what a story! What an evil disease!
-Jenny

By annwood On 2008.12.29 18:00
Punky - so sorry that you are going through all of this. Yes, it is very hard to make decisions for another person. It helped me to remember what my husband had wanted prior to his diagnosis of PD. He had directives stating no feeding tubes and of course on his last hospital admission they really pushed me to have one put in. Even though I knew what he had once stated it was hard to sign the refusal papers.

I think many physicians and nurses do not understand PD and are not prepared to care for these patients. I got through nurses training without ever seeing a PD pt and my only lecture about the disease covered it in abot 10 min - pill rolling and shuffling. The medical school curiculum has even less. It is merely mentioned as a degenerative, neurological disease along with several others. There are also times when I question just how much some of the neurologists know about the day to day trials of a PD pt. (That is another topic).

What all of this means is we, as caregivers, have to be extremely vigilant if our loved one is admitted to the hospital. You may have to educate staff and remain at the bedside most of the time. They are notorious for not getting PD meds delivered on time. (Another topic).

It will take John a long time to recover from all of this. The confusion and exacerbation of his symptoms are secondary to what he had been through and that can continue for several months.

May I suggest that you use the time that he is in the rehab facility to get some rest? Youa re going to need it when he comes home.

Good luck and prayers.

By lurkingforacure On 2008.12.29 20:27
I too am sorry you are going through this, what a nightmare. My prayers go out to you and your husband.

By susger8 On 2008.12.30 18:40
What an awful story. I hope things get better.

My dad did OK with his pacemaker changes (he's on his fourth pacemaker now), but last March he broke his hip and while he came through the repair surgery physically, he seems to have lost ground mentally. My experience is that a change in physical environment (such as a hospital or subacute unit) worsens my dad's confusion dramatically. He improved when he was able to come home, but not really to the same level as before. The same kind of thing happened two years ago when he broke his ribs.

I don't think you were wrong to agree to the battery change. He probably would have done fine if he hadn't had the bad luck to pick up MRSA while hospitalized.

By happygranny On 2008.12.30 19:43
My heart felt sympathies to you and John and what you have endured. It sure puts our problems in perspective, though it is very difficult for us right now.

It was timely for me to read as I am newly started on the road of care giver to my dear husband. Although he was only Dx'd in late November, he has had PD for many years. Because his mother had Alzheimer's and his Dad had familial tremors, all the symptoms he started to develop over 10 yrs ago were thought to be related to those illnesses.

It was this summer as he really aged fast, slowed down, got constipation and then finally the terrible painful muscle contractions and spasms that had me take him to the ER, Nov 27th where he was Dx'd with PD and given levo/carb. He is sensitive to the meds and we have had to ramp up very slowly.

Dealing with the health care professionals along the way has been quite an experience. You are right, they know so little, and I think the type of muscle contractions my husband has is quite rare in people over 70. I felt we were not taken seriously until he was over the top. His doctor really dropped the ball as time after time we kept going to him asking what is wrong? can we have a referal to a Geriatrician? Nope, he just talked us out of any of our concerns. Finally I took him to the ER, got the Dx and levo/carb

He can still think clearly when on his levo/carb, although there is some hallucinations. He can look after his own personal care and feed himself. It is when the spasms hit and he is so agitated and not thinking clearly that I am frightened and feel powerless.

Last night was one of those nights and as it is Christmas week none of the movement disorder clinics are open and I was beside myself with what to do for him. Luckily, after a few phone calls I did find someone who seemed to understand and she talked to me and then to my husband as he had started to settle down from the clonazepam I gave him. It was good for my husband to talk to her it helped settled him and make him more responsive to taking the clonazepam which he didn't want to take before. It makes him so sleepy, even the 1/2 5 mg tablets.

Today he is still having those 'attacks' and agitations, but he is taking the clonazepan and handling things a bit better.

I had no idea what PD did to people or how fast it happens. 3 months ago he was having difficulty but still functioning at his computer and going to the archives and doing family tree research, now he can hardly sit at the computer let alone use the mouse.

talk about rambling...........

thanks for listening,

Jeannie

By annwood On 2008.12.30 22:10
Hi, Jeannie

You do not ramble. I always found that writing down events and feelings was very theraputic for me so you just write as much as you want.

I know that you are still somewhat "shell shocked" and that in the past 3 weeks you have had to undergo a crash course in caregiving. It sounds to me as if you are doing a great job. It is very natural to be frightened at times - I am a nurse and it still frightened me at times. One of the worst things is to want to help but to not know what to do. Unfortunately there are times when you won't be able to make it better.

Your husband's case sounds very unusual in that he went so long with symptoms before a diagnosis. In some ways that may have been a blessing because the outcome was always going to be the same. My husband was diagnosed 17 yrs and at the earliest time - when he noted small muscle tremors in one hand. He continued a busy medical practice for 13 yrs after diagnosis but our life was different - he required a lot of rest and support before he finally retired. In order for him to work we had no other life. He quit work when the early signs of dementia developed and from the point on his PD progressed rapidly.

It will take some time to get his medications where they should be and they may have to be adjusted periodically even after that. We have wonderful people here on the forum and all of us will be here for you. I found that I was posting after midnight and still receiving answers to my questions.

Good luck and prayers.

By sachet On 2008.12.30 22:54
Jeannie,
Don't worry about rambling, we all need to vent out feelings with PD, seems like we are always in the unknown, or in a more postive way of saying it would be we are continuly leaning.
My husband was diagnosed about 17 years ago, first ten years not much change that we really noticed then five years ago he had a car wreck and it has been down hill ever since and the past three months it has really be fast, he now uses a walker and does not want to go anywhere very often and wears Depends, can still talk some & most of the time he makes sense then other times he is not sure who I am.
Wishing you the best and please keep sharing--this forum really helps, since it is full of very wonderful people

By happygranny On 2008.12.31 13:04
Thank you for the supportive words, it feels like a hug.

Jeannie


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