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By kathy On 2009.08.08 13:14
I have been a lurker for over two years. I posted long ago when my husband was first diagnosed with PD. He is 84 and was diagnosed about 4 years ago. I have learned so much about the disease from you good people and I thank you for all of the information I have been privy to through this forum. My question is what to do now that the disease has progressed to the stage where he wants to sleep most of the time in his bed . For the last two weeks, he has shown no interest in life around him, except to watch a movie occasionally. He doesn’t want to eat, except oatmeal because food becomes “stuck” in his esophagus. I brought his Jazzy scooter in the house for him to use because he fell once and almost fell several times later when using his walker. He forgot how to drive the Jazzy but with a little practice, he is doing well with it and has run into doorways only a couple of times. He is on the Fentenyl Patch recently upped from 25 mg to 75 mg and takes Vicadan three times a day with Advil in between. He also takes Cymbalta, Requip 4mg XL, Stalevo 50 mg, Lyrica 50 mg, and other meds for his many other problems. He can still shower alone but I stay nearby to help if needed. He is almost never left alone. Our daughter lives next door and is very good to help. A home health care nurse visits once a week to monitor his condition. I am trying to get hospice involved mostly for pain management and palliative care but Medicare will not approve PD as a reason to admit him to their program so we are working on weight loss (fourteen pounds in the last two months) as a reason to be admitted. Sorry this is so long. My thoughts and prayers go out to you who have PD and you caregivers. Annwood, thank you for staying with the forum even though you are no longer a caregiver.

By annwood On 2009.08.08 15:39
You are very welcome - it is my pleasure. You are my friends.

So glad you stopped lurking and joined us. It is a little scary at first.

First, I don't understand the exclusion of PD from Hospice. Many of us have used them and it was never a problem. You should check further on this and be sure and tell them he is end stage.

You are at th point where it is very difficult. You are losing your husband a little more each day. It does seem as if he is on a boatload of pain medications and this alone may be contributing to his sleeping and disinterest. You mention other medical problems so I am assuming that is the reason for the meds.

Stay with us - we are always here.

By bandido1 On 2009.08.08 17:21
Kathy: Paient Bob C here. I agree with Annwood Medicare should not be rejecting you. Use of the term"hospice" may be the sticking point. Perhaps it is a paperwork issue such as paperwork required from your Dr.. For your information, I am a 77 old patient receiving daily showering, dressing, fundamental testing of blood pressure, pulse, etc. I also have a weekly nurses visit and she is on call if needed and as often as needed. All expenses are covered through Medicare, by a retirees insurance plan and only prescription expenses are partially covered by me. You should also know that my primary Dr.,my neuro and my cardiologist are all agreed that when my condition deteriorates to levels you are observing, it is then time to seek hospice care. No nursing home! No hospital! No more at home24 /7 care. Your job (and the patients wish and instruction) should be to ensure a quick and painless ending. Bob C

By kathy On 2009.08.08 20:21
Annwood. thank you for your response. Do you recognize the symptoms that I mentioned as end stage? I can hardly let myself believe that but I know it must be true. He also has spinal stenosis, neuropathy, osteoarthritis, mild COPD and acid reflux to mention a few. He beat Non-Hodgkin’s Lymphoma in 2002 but he doesn’t seem to be winning this battle. He saw an oncologist a few weeks ago who pronounced him free of cancer. I prepared his dinner this evening so that he could drink it rather than spoon it and he was able to get it all down. I have done this before and will probably continue doing that as long as needed. I hope you are finally having a happy life.

By kathy On 2009.08.08 20:28
Bandido thank you for your reply and the sharing of information. I enjoy your sense of humor that I have read in some of your posts. It sounds as if you have all of the helpers that you need and want. We can have all the help that we will need in the future from our home health care but they cannot do anything about pain management. That is why I want hospice involved and will keep up the battle until we get it. I can hardly stand watching him suffer. It is just so sad.

By annwood On 2009.08.08 22:33
Sorry, I didn't mean to alarm you. Without knowing your husband it is impossible to say exactly where he is with his PD. I would certainly defer to his neurologist. His symptoms are confusing given all of his other medical problems and the numerous medications.

I have never heard of Medicare refusing Hospice care for PD. The requirements are a progressive disease with no chance of recovery and unfortunately PD fits the criteria. I believe the best thing to do is contact your local Hospice and ask for an evaluation. Often they will do all of the leg work for you - obtaining a referral from his physician and getting insurance coverage. It will not cost you a penny. They provide all of the PD meds (not the others), medical equipment (commode, hospital bed, etc.), supplies, an aide to bathe and shave him and a weekly evaluation in your home. I don't know what I would have done without them.

Your husband has been through so much. He must be a very strong individual.

By kathy On 2009.08.08 23:35
Annwood, you didn’t alarm me. Sometimes when he is doing better for a little while, I try to fool myself into believing he will get better but he doesn’t and won’t. He is very strong and complains so little. He is retired military and a retired teacher and had four children and a wife that he raised. (Child bride) Now it is our turn to take care of him. When the hospice nurse manager visited us, husband was not having a really bad time of it so she placed him on the on the very edge of their criteria for being admitted to hospice. I am taking him in to see his primary Tuesday and will make it clear that something needs to change. The neuro is not much help at all except to prescribe more pills. An RN who works in ICU at a local hospital told my daughter (who is an RN) that we might consider calling an ambulance when he is having a really bad time, go to the ER and ask to be seen by a pain management doctor. The doctor that she mentioned is the one in hospice who denied the admission to hospice with the PD diagnosis. I really hesitate to take him to the hospital for any reason in his fragile condition. As so many on this forum have mentioned the hospital is a dangerous place for a PD patient. Thanks.

By dkleinert On 2009.08.09 00:15
bandido: Thank you for being such a great contributor to this site - your insight and honesty is always soooo helpful to me. You said some things that I want to clarify: 'receiving daily showering, dressing, fundamental testing of blood pressure, pulse, etc. I also have a weekly nurses visit and she is on call if needed and as often as needed. All expenses are covered through Medicare, by a retirees insurance plan and only prescription expenses are partially covered by me.'
Is it true that I could obtain these services for my husband without having to pay the $17 an hour I was quoted recently? I only make $11 an hour at my job, and so there is no way I can afford to pay someone so much. I so worry about Joe when I am gone away from home 4 days a week for 10+ hours on each of those days.
How were you able to obtain those services?
Joe has IBM Retirement United Health Care (we pay for each month) and Medicare. Joe is in Stage 4. I would love to have those services for Joe if you can tell me how to obtain them. I will not put Joe in a Nursing Home ever, so whatever care I can obtain here at home will be such a blessing. Bandido1 THANKS so much! I hope your answer will help lots of others out there too!

By bandido1 On 2009.08.09 20:39
dkleinert: Patient Bob here: I am going to try to answer questions raised in two threads in my reading posts for today. But first, a word of caution. My caretaker spouse who, of course, pays all of bills needs to certify that most if not all high medical expenses are submitted directly to Medicare and then onto my insurance company. It happens that I am also insured by United Healthcare. I sent my wife on a three week cruise as a reward for her love and care taking services. When she next call's me, I will verify these facts. In the meantime I'm 95% certain that they are accurate. Please discuss these matters with your primary Physician and Neuro. I believe some sort of authorizing paperwork is required by both Medicare and any insurance company.

Dealing with issues of pain management can be difficult, especially those related to back problems. It so happens that I have degenerative disc problems ncluding sciatica. I cannot stand for longer than 5 minutes without experiencing extreme pain(level 9). Except on rare occasions I refuse to take prescription medicines for pain. Sometimes I take the Tylenol offered me for sleep purposes. Reason? I don't want to get hooked! I guess the bottom line is he has to learn to live with it and you have to learn to tolerate it including the crappy behavior that accompanies it. good luck Bob C if

By kathy On 2009.08.10 20:07
annwood and patient bob,
Thank you for your information and encouragement. I called hospice today and got a new evaluation and a new RN to do the evaluation. During my call, I mentioned that I might interview the other two hospices in town. Within 3 hours after many questions, answers and tons of paperwork, my husband was admitted to The Hospice of East Texas for at home care. We are looking forward to less pain for him and a more comfortable life. What a relief !

By annwood On 2009.08.10 22:02
I am so glad that this was arranged for you. I sincerely hope that you find Hospice to be as much help as I did during my husband's illness. They helped me when things got really rough. This is a hard road - you need all of the help you can get.

By bandido1 On 2009.08.10 23:58
kathy: what wonderful news! I can't begin to tell you how much it means to me to hear a fellow patient has broken through the paper jungle barrier.

Thanks for the prompt update. It will save me from having to burden my spouse with questions while she is enjoying her time off. Bob C

By kathy On 2009.08.11 09:41
Thank you, Bob, for sharing our good feelings about getting positive results with hospice. I sincerely hope that you don’t experience level nine pain often. I have seen what it does to my husband. Terrible! I hope your wife is enjoying her three-week cruise.

By WitsEnd On 2009.08.11 10:17
FYI if for any reason you are not happy with the hospice you have chosen, you can change once in a 6 month period. PD is definitely covered and I am so sorry you had problems finding one initially.

My heart and prayers go out to you. You will have a roller coaster--some days better than others--the fact that he can still bath and walk is a good sign. The weight loss and increasing swallowing problems are not. Try to vary the foods and be sure to include Ensure...and cherish the good days.

God bless.

By kathy On 2009.08.11 13:38
Thank you, WitsEnd, for your kind words and information. I did not know about being able to choose a different hospice if not satisfied with the first one. I think the one we have chosen will be great even though we got off to a slow start. It has been highly recommended by several people who have had experience with them.. We buy Ensure by the case at Sam’s Club and give him all of the nourishment and liquids that he can handle. Day by day, he becomes more helpless and dependent on me. However, he instructed me, in a nice way, yesterday to quit nagging him. I have been dreading this part of PD for years. Now I know a little about what so many others on this forum have been talking about.

By kathy On 2009.08.27 22:12
Hello again my friends. Since I last posted we have been fighting a downhill battle. The disease won and my husband passed away on August 25 at 12:58 pm six hours after his brother passed away. We are in awe that such a thing could occur. Now four brothers are “up there” having fun. My daughter and I did all of the care giving except for baths that were given by a hospice aide. We were so grateful that we finally got into hospice and could get the meds necessary to make his last weeks pain free. Your postings were invaluable to me in helping my husband through our struggle with PD. Now it is over. Thank you all. Kathy

By deedeesdaughter On 2009.08.27 22:39
I am new to this board but wanted to offer gentle hugs to you.....
Prayers to you and your family....I am sorry for the loss of your husband and his thoughts are with you as well.
Mary Ann

By annwood On 2009.08.28 00:43
Kathy, I am so sorry for your loss. You are to be commended for your care of your husband - I know how difficult it was. It is now time for you to rest, my dear, and know that all of us are with you in spirit. Thank you for letting us know.

By susger8 On 2009.08.28 08:36
Dear Kathy, I am sorry to hear this news, but glad to hear that the end was peaceful and that the hospice people helped you so much.


By kathy On 2009.08.29 09:34
Thank you my friends for your expressions of sympathy for my loss. I hope that in the future, I can help someone else but right now, I just feel lost and need to find out what to do with the rest of my life. The house seems so big and it is so quiet. Good luck to all of you patients and the caregivers who stand by you.

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