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Old 08-06-2008, 01:03 AM   #1
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pgmccann HB User
End Stage Parkinson's

I'm new found this in the wee hours of the morning. I can't sleep so I figure I might as well try and find the answers to the things keeping me awake.

My mom is 82 and has end stage Parkinson's disease she is in a nursing home and has been for 2 yrs now. About 2 mos ago she developed a bed sore and it has been a downhill battle since. At one point she was refusing to eat solid foods but doing more research it is the combination of events that is bringing a lot of this on. She is drinking protein fortified drinks and getting a vitamin now. Some days she'll eat soft food for us.

Hospice got involved 2 weeks ago and they are wanting to take some aggressive positions on this. Things I need to decide this week.

1. Put a catheter in - to keep her dry so the wound has a chance to heal. down side higher risk for infection and the wound probably won't heal.
2. Upping pain meds.
3. Care plan meeting with nursing home staff and hospice staff to discuss wound treatment, getting her a geri chair and changing her diet around. This is happening in 2 days

I called her primary care physician and we had a pretty frank conversation the other day. He is going in to see her on Thursday and it will probably be in the early morning hours and I'll have his side of things before that meeting.

I've always been close to my mom we have a good relationship and I have POA in her affairs. This is weighing on me heavily and I'm feeling so inadequate to the situation. I'm not sleeping, not eating and I have young sons to take care of, one is turning 9 this week. I've had a virus the past week and 1/2 and haven't been able to get in to see her. I definitely don't want to take something else that could confuse the mix.

As much as I know this is a terminal condition a part of me doesn't want to let her go. I'll never want to let her go. But I have to. Would it make sense to have hospice get me some grief counselling. I've always felt I had a pretty good grip on all this but lately I just don't know.

Advice on the points above from someone who's been there would be helpful and also how do you let them go with dignity? I don't want to be the reason she fights to stay when her body is just so worn out that she wants to go. How do I make the calls to ease her out with dignity? I really don't want to see her suffer anymore than necessary as much as I want her with me. I need to have a path forward this week that we can follow and be comfortable that it is the best thing for her.

She's had dementia episodes for the past year and with the onset of this bedsore she is losing weight. It is hard to see her the way she is. The smell is overwhelming from the wound. I realize I'm writing a novel. I guess we all tend to do that when we ar at a crossroads with things.

Any advice or suggestions is welcome. Thank you in advance for reading.

P

 
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Old 08-06-2008, 10:12 AM   #2
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windwalkerwest HB User
Re: End Stage Parkinson's

Hi,

Sorry to hear about your mother, it is a difficult time and you have some difficult decisions to make. Perhaps you could look at it this way: What would your mother want and/or what would you want if you were in her place?

Betty

 
Old 08-07-2008, 08:29 AM   #3
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glama9 HB User
Re: End Stage Parkinson's

I am very sorry to read your post. It is a very sad situation which is almost impossible to deal with. I have PD and so did my father who died in 1993 at the age of 91 1/2. He was home for the 6 years after his diagnosis with pneumonia and bed sores. A physician would come in and debride the sores and that saved him many times. However I would not advise it since it just prolongs the agony. You have done an admirable job and should be very proud to be such a devoted child. Best wishes for your future with your family.

 
Old 08-07-2008, 10:26 PM   #4
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pgmccann HB User
Re: End Stage Parkinson's

Thank you so much for your remarks. In one of those ironies of life this morning before the meeting about her care it became very clear to me what needed to be done.

They debride this wound but it just has gotten too big and too deep. Inadequate nutrition is compounding the problem and her PD rigidity is so bad now that she can barely move. She also goes between hallucinating and agitation. She's waking up in the mornings soaked with sweat and as I found out it is all part of the PD advancing.

She was diagnosed with PD over 20 yrs ago and managed to present very few symptoms and seemed to have a slow progress with the disease up until about 4 yrs ago. I took care of her until 2 yrs ago when it just became more than we could handle at home. The facility she's in is less than a mile from where we live so we are there a lot.

We are taking the route of comfort care. We aren't going to fight what is happening and try and prolong things. She doesn't have a quality of life and that isn't what she would want. So we are on a path to ease her way out. Everything that was decided today was done with the intent of keeping her comfortable.

glama9 your remarks mean a lot to me. I cannot thank you enough. It has been hard to deal with at times, for me, it is hard to watch this disease take its toll. I am truly sorry that you have this battle ahead of you. I can only pray that they are able to bring the new treatments to the table so that you won't have the same outcomes.

 
Old 08-07-2008, 10:44 PM   #5
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AnnD HB UserAnnD HB User
Re: End Stage Parkinson's

Just know that you have made the right choices and now know your mom is in good hands with hospice. It is too bad the nursing home wasn't more on top of mom's condition but things happen and now you are correct in giving her comfort care. It isn't easy losing a parent but know you did the best you could for her in her last days. take care.

 
Old 08-10-2008, 12:17 AM   #6
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Pepper08 HB User
Re: End Stage Parkinson's

I'm so sorry that your mom and you are having to deal with this. My husband has PD. He is in the beginning of stage two. If it where me, I would tell my mom that it is OK for her to go home if she wants to and that you will follow her one day shortly. It is the most loving gift you can give your mom right now. Many times a loved one that is near the end needs to hear these words from those they love. I've seen it time after time on my job. It sets them free. May God give you courage and peace of mind.



Pepper

Last edited by Pepper08; 08-10-2008 at 12:19 AM.

 
Old 08-10-2008, 07:20 PM   #7
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4point9 HB User
Re: End Stage Parkinson's

Hello,
I can thoroughly understand all of your emotions and questions, because I too have and am going through your same situations. My Mother in Law died in 2004 from complications to Parkinson's Disease. She had Lewey Body dementia, and also had a bedsore that had the foulest odor that would almost knock me out when I would go into her room. What began with just a small area on her spine, actually went into her bone and caused her a tremendous amount of pain. The number one cure for bedsores is prevention, and since she was in a nursing home at the time, I couldn't keep the eye on it that I wanted. It seems that once someone gets a bedsore, it progresses, despite the care to help heal it. I am clueless of how to treat them.
At the time, Mother couldn't eat well, mainly pureed foods, then just shakes. Gradually she couldn't eat at all, then after the bedsore, she began to shut down. Blood tests revealed that she was beginning the dying process, so we just made her comfortable until she passed.
Now, my own Mom is in the same nursing home with Parkinson's disease. She is in a wheel chair, can't walk, and can't stand anymore. She has no dementia. She eats okay, though it seems best if she doesn't have foods that are too firm. She has no use of her right hand, so has to use her left to eat. She just got 3 tiny bedsores two weeks ago, the size of a pinhead. I talked to the staff, and they are giving it aggressive treatment. I have a meeting with her doctor and the administrator about her progress and status this week.
In regards to your case, I believe you are doing well, and the worries, etc., you are experiencing now are normal. I would continue to have them keep your Mom comfortable, and maintain feeding her and giving her fluids. It is in the dying process that when they try to feed her it is more painful for her because the body is beginning to shut down. I hope this helps you. I will pray for you and your Mom. God bless, 4point9

 
Old 08-16-2008, 07:13 PM   #8
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jerseymomma HB User
Re: End Stage Parkinson's

I am so sorry to hear about your mom! I have alot of experience with bedsores (a relative of mine developed a stage 4 that went down to the bone) and have dealt with the issue extensively when I used to work for an elder neglect attorney. I used to live in langhorne, PA so I have alot of connections and advocates in PA that can help you. I also have close attorney friends that you can talk to for free because your story breaks my heart. My prayers are with you and your family

Last edited by moderator2; 08-16-2008 at 08:23 PM. Reason: posted contact info

 
Old 08-20-2008, 08:11 PM   #9
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Rhoda55 HB User
Re: End Stage Parkinson's

Oh, I so know what you are going through! My mother is 87 and in end stage parkinsons. Mom has dementia along with parkinsons, highblood pressure and has been having tia strokes. It is so sad, almost like there is no emotion left in her. Her body is so weak from the disease that it takes 2 people to handle her, and she only weighs 90 lb, if even that. She doesn't really talk much any more, and if she says something to me, I can't hear her, and she gets annoyed when I ask her to repeat herself. I cared for her at my home for 8 months, until she got to the point that I could no longer provide her with the type of care that she needed. She choked on her food often and I started to buy baby food and finely chop up her meals. I started giving her her tea and water thickened as ordered by her doctor. But eventually it was such a struggle for her, that she started to fight eating and started to lose weight very rapidly. She is now in a wonderful facility, but the fact is, I know that things will not get much if any better. I know how hard it is for you to be dealing with what you are going through with your own mother. And especially the fact that you have young children. Just know that you are doing all that you can do. You need to take care of yourself as well. This disease takes a toll on all of us, it is awful watching a loved one go through this.

 
Old 08-29-2008, 05:27 AM   #10
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pgmccann HB User
Re: End Stage Parkinson's

First I want to let all of you who answered my post that my heartfelt thanks for your honesty and sharing. It has meant the world to me.

My mom passed away on August 25th and we buried her yesterday. After that post we moved her to comfort care regimen and let her pass. She was in no pain and we did all the little things to help her. It was a hard process much harder than I thought it would be. The hardest part for me was watching her lose weight and atrophying in the bed. At a certain point I prayed for this to be over quickly. From the information everyone shared this could have been a longer process.

If the person responding is a healthcare professional, you have my deepest admiration and respect. The care my mother received from the nursing home and hospice was beyond wonderful. I could not do the jobs you all do day in and day out and mere words on a message board won't do it justice.

She's no longer suffering anymore and we are at peace with how everything played out. You kind people even though we are anonymous to one another played a part and I thank you for your contribution. Everything I learned and gained helped me in this experience.

 
Old 09-06-2008, 06:23 AM   #11
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4point9 HB User
Re: End Stage Parkinson's

So sorry to hear about your Mom. I know it is so difficult to see them suffer, but with her medical background, she was one brave woman to take this terrible disease. My Mom is doing better mentally, but physically she is not. She has two bedsores that are being treated now and she says they are getting better. They don't hurt her anymore, as I know the pain can be unbearable. God bless and thanks for sharing.

 
Old 10-17-2008, 08:45 PM   #12
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Re: End Stage Parkinson's

I know of someone who has suffered in end-stage Parkinson's for several years and has been on a feeding tube for the last 18 months. CNAs care for her in her own home 24 hours a day. Her suffering is unspeakable, yet she continues to exist. I don't use that word cruelly, but that is the reality. She no longer speaks, can no longer close her mouth, her hands and feet curve inward, she is on oxygen, sleeps much of the time, and as I said, has been on the feeding tube. She has had several colds but is given antibiotics and recovers. Her caregivers constantly suction the accumulation of mucus. She is transferred from her hospital bed to her wheel-chair almost everyday and is at best --barely alert. No one can communicate with her. At times, she will frantically attempt to form words in an effort to talk, but no sound comes forth and rarely can someone understand what she so desperately tries to convey. Those who love her are beginning to question the wisdom of the feeding tube. I know this is an indelicate question, but is her situation indicative of the course of the disease? Does anyone have any words of comfort or advice? Thank you.

 
Old 10-18-2008, 08:20 AM   #13
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Re: End Stage Parkinson's

I think there is a living will, but one of the CNAs who fights valiantly to keep the patient alive has become so emotionally involved that any mention of removing the tube has caused her to threaten the patient's partner of over 40 yrs. with prison! She was under the care of a local Hospice for 3 yrs but was recently dropped because of the time restraints. Now there's some talk of finding another Hospice to accept her, but this could go on for years, couldn't it? The patient is 74 and has battled the disease as well as dystonia and polio for most of her life. The Parkinson really began about 12 years ago. If you can't already discern, I am an advocate for the long-suffering partner. The patient's family has done nothing to help. And it also seems the partner must now fight this particular CNA who has single-handedly kept the patient alive (or thinks she has.) The patient's partner is in a quandry to say the least. What should she do? Thanks for your comments.

 
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