Helping Those Who Care for Parkinson's Patients
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I’m 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 Parkinson’s. 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. It’s hard making decisions for someone else. It’s hard enough to make good ones for ourselves much less to be responsible for a loved ones well being. It’s somewhat like trying to explain to a tantrum-throwing toddler why he can’t 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 Parkinson’s 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, redness 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 specializing 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, accelerated Parkinson’s 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 wasn’t out of the woods yet. He developed a violent and angry rash all over his body – a probable allergic reaction to the long-term antibiotic (Vancomycin). Prednisone was prescribed to relieve the awful itching. He immediately spiraled downward to a renewed state of extreme psychosis and was once again transferred out of the sub-acute care facility back to the hospital. He remained there for 2 more weeks. His Parkinsons has kicked in vehemently and all associated symptoms have accelerated. He’s back to square one in weakness, confusion, and has lost the ability to put one foot in front of the other. He is awaiting yet another transfer to the rehab sub-acute care facility to work once again on regaining strength and hopefully. He has regressed to such a degree that we’ve made the decision to bring him home. We are determined to love him and care for him for as long as it’s humanly possible. Hospice involvement in lurking right around the corner. Because of the perception that the long fight and journey is coming to an end, this has been the toughest decision of all. He must be cared for as we would a baby from diaper changing to spoon-feeding. He’s unable now to give us any real feedback about what he’s feeling and we have to pretty much guess what he wants and how to make him comfortable. I share this not to frighten anyone but to alert everyone to the unforeseen consequences and possible dangers for our compromised Parkinson’s loved one. Any trauma, from a simple cold or infection, tends to exacerbate Parkinson's symptoms. Four months ago he was only limited by his Parkinson’s; now he’s totally incapacitated by this assault on his poor compromised body. And now we 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 “ routine battery change.” With the grace of God and the help of family and friends, we will get through this. And we’ll be better and stronger people as a result. |
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I really feel for you and understand totally what you are going through. My dad's last stay in an "extended care" ward in the hospital really took its toll on him and he is in the same place right now- he cannot really communicate and is fluctuating between being bedridden for most of the time. I can tell you that the decision for hospice for us has been a godsend. Even if you do not want to admit that the fight is almost over, hospice can be a very valuable resource and can help with your loved one and advise you. If your loved one rebounds (like my Dad did several times last year), then Hospice can stop and then resume again when needed. (at least that is the way it was explained to us although this is our first time...). If it is covered and you can take advantage of it, you should. You do not have to use the word "hospice" in front of your loved one, just say that they are nurses helping out. At first I was worried because it felt like we were surrendering to the inevitable, but I understand now that it is important for us to make my Dad's life at this point as comfortable as possible and Hospice is really helping with that in addition to the care he gets at the board and care. They are a great source of support and advise for us right now. This board is a great resource also, read through the many posts and you will realize that others have been through this also and have a lot of experience and that you are not alone in your feelings and they are certainly understandable. Take care and know that you are doing the best that you can. Don |
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Hi, Punky Rant, rave and ramble as much as you want - we are here. I have been in your shoes and it is so very hard and sad. I think you are doing the right thing by bringing him home where he will be comfortable and well loved. There is also the possibility that he will improve once he is back in familiar surrounding. I personally feel that we sometimes overdo therapy and rehab with out PD loved ones and someone has to finally say "enough". It is very hard making all of the decisions. You have to try to remember him before PD - how he acted, what he wanted and assume that is true now. Don't second guess yourself - you know him better than ANYONE. Do get Hospice involved as soon as possible - they are wonderful. Not only will they support your husband but they will be there for you. Hospice and this forum got me through that final phase. Hospice doesn't always mean that the patient is actively dying - they just have to have a progressive, incurable disease and a physician's referral. Hospice re evaluates the situation for eligibility every four months. They supply all of the medications and supllies and in my case they sent a lady twice a week to bathe, shampoo and shave my husband. Try not to worry about the medical bills right now. There will be time for that later. People will get off the telephone if you say "I am unable to talk to you right now, my husband is dying". It even worked on the Republicans that kept calling him for money! Depending upon his will and finances this will all be thrown over into the estate and you can deal with it later. Right now you are too emotionally involved in caregiving to worry about that. |
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Hi, Punky, My Mom has end-stage Parkinson's and was in the hopspital a few weeks ago due to a stroke/meds overdose. She's now in her retirement residence again (on the assisted living side now in the respite room) and hospice is visiting. I'd have to say having the hospice folks come has been a huge help not only to her but to our family. She still hurts sometimes, but for the most part they've really got her pain under pretty good control, and they are giving her things for anxiety, which is good. It's been good for us too, because we can call and get updates on her from the nurse, in addition to still visiting her pretty often. I have nothing to good things to say about the work hospice does. Kristine |
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Hi Punky, I found this forum a few weeks ago and have just been checking in when I can to read. Your situation, although not exactly like mine, has some similar tones. I moved here three years ago and my youngest sister and I bought a house and remodeled it to make it handicap accessible for Mom. Dad was her primary caregiver at the time and she could still use a walker. As they are in their 80's, I felt it was time to move back to help them out. (Until then I had a wonderful well-paying job, and I hopped on a plane whenever I felt like it and went to Europe or wherever I felt like on a whim.) I would still move here to take care of Mom but WOW! I had no idea what this would entail. I just knew it had to be done. We are probably in the final stages now and a few weeks ago we started Hospice. They have been wonderful and responsive to all of our needs. I would recommend that you start as soon as possible. We just ordered a patient lift which my siblings are helping to pay for. We hope that will save our backs. I am afraid the Mom will soon be at the diaper stage and it almost seems the last of her dignity will be gone at that point. She does a lot of sleeping. The hardest part has been the constant need to sit up, or lay down or sit on the pot, or turn the fan on and then turn it off. Some days it seems relentless, and when this is all over, I may change my first name because I get called so often that I am beginning to hate the sound. I have not been out of the house in a week, except to go in the back yard with the dog to cry. If I try to talk on the phone to a friend, I get beeped almost as soon as I start talking. I have been in to see to her needs 5 times since I started writing this. This last time I asked what she needed and she said she didn't know. Mom was the mother of 8 plus assorted "adopted" kids, Nana to 27 grandchildren and 13 greats. Her sense of humor was dry and wonderful and she still comes out with a one-liner now and then. She and my Dad have been married for 64 years and still sleep in the same bed, facing each other and holding hands. It is so sad to see this wonderful woman so slowly lose all her physical abilities. This forum has been a wonderful help to me. I found answers to questions that the doctors can't seem to answer (when they return your call!) Thank you all for you honesty and remember to listen to a good joke. It helps! Suzanne |
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| Ah Suzanne - I did indeed smile when I read your post. We have much in common and I'd bet we both are becoming better people as a result of it. We have 8 children and 18 grandchildren. Those close enough have set up a schedule so that one comes everynight at 6:00 p.m. to help me get him in bed and settled for the night. We bought a lift also and it makes it somewhat easier but the diapers and lotions and dressing and undressing are hard. His arms and legs are so rigid it's hard to pull and push to get him out of clothes. He, too, has always been a sweet and gentle guy with a wonderful sense of humor. No more one-liners; no more smiles, no more jokes from him now but ahhhhhhhhhhh so many memories! |
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My dad went through the MRSA ordeal during his last hospital admission. The doctor said he required 10 days (+/-) of the antibiotic. They talked about a long term care facility. Finding a good long term care facility for this type of thing isn't easy and not on a quick turnaround. Changes in surroundings are also hard on the dementia so I said I didn't like that idea. I asked about home health care and they said they would look into it. The next call I got (was not from the hospital or doctor) but was from one of these medical supply places telling me that the antibiotic was covered under Blue Cross Blue Shield and Medicare D--but the "supplies" weren't and they were wanting a credit card to charge over $600 of supplies such as gloves, alcohol wipes, IV pole, needles, heparin, etc. I said "thanks but no thanks" and they said they would see if their director would "give a discount". I still said no. I talked to the hospital and told them to keep him in the hospital since that would cost nothing out of pocket compared to over $600 or more for home health care. They told me that if they did that it could cost me a lot more because I might have to pay the hospital bills. Fortunately I had spoken to someone who told me that Medicare had just passed a rule about MRSA and hospitals. It seems if a patient develops MRSA at a hospital that the hospital has to keep the patient and cure them because patients get MRSA when hospital staff don't wash their hands and use routine santizing procedures. So I asked the doctor if he had a fever or infection when he was admitted. The answer was "no". So I told the hospital that he got the infection there and they should treat him no charge. It must have worked because I didn't hear anything else. So about those large bills you are getting....you might want to check and see if my solution could work for you. You shouldn't have to pay for an infection that the hospital caused. If he didn't have it went he went into the hospital (and the prescreeing of blood work, temperature, etc. would have shown it if he had), then he had to get it at the hospital. BTW my Dad's not doing so well. I think we are getting close to the end. He bounced back for a couple of months, but he's regressed badly in the past few weeks. Say a prayer for him please for peace and comfort. Thanks. |