For those who care for someone with Parkinson's disease
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By lizettae On 2010.12.14 15:35
Can anyone help me with this? My mom is in her last stage of parkinsons and she is bedridden. She has lost a significant amount of weight, can't eat hard or now much soft foods, and has started to get choked off her saliva. She has declined so rapidly it is almost a scare to me. What do anyone recommend the life expectancy to be? I know it's hard to tell but I need some kind of help from those who have been thru this. Her doctor has recommended not to do the feeding tube but what else can I do? She is holding her pills in her mouth and sucking on them because she can't swallow them with the liquids. I have to try to make sure they are gone out her mouth. Please anyone help me.

By Pearly4 On 2010.12.14 18:58
I'm sorry -- this time is so hard. I haven't experienced this myself (my mother died suddenly in her sleep), but so often other have recommended Hospice be involved at this point. They would be able to offer you some much needed emotional and physical support, knowledge and help in administering medications, etc. and assist in your mother's care. Have you tried searching for a local office, or ask your mother's physician for a referral - some local hospitals and adult care centers are now offering hospice support as well.

I'm sure others will be posting with more relevent suggestions, perhaps.

Good luck and God bless.....

By KD On 2010.12.14 22:01
I, too, would recommend seeking hospice help at this time. Medicare covered the costs and we were assigned a nurse, home health aide and social worker. They'll come to your mother's home (or wherever she is staying) to do an assessment and a plan is formulated.
Both my mom and dad were at home during their final days - at their request. They both suffered from PD but each passed away from cancer. After the hospice evaluation, most of their medications were discontinued but they were still given meds for the Parkinson's. The hospice nurse would be able to help you deal with the problem of giving your mom her medications. Both of my parents stopped eating solid foods and they passed away about 4-6 weeks after that. We had continued to feed them food such as Jello, ice cream, flan (my mom's favorite) and drinks as they asked for them. We tried not to force it but it was hard at times. (I think your natural inclination is to want to help and watching them not being able to eat or wanting to eat or drink made me feel totally helpless.) The time came when they couldn't eat or drink any more so we made sure we used the swabs provided by hospice to keep them hydrated and comfortable.
As many people have stated on the forum, every person is different. There were many times when we thought we were going to lose my mom or dad and they would rally and hang in there. My mom was in hospice care for several months before she passed away. Has her doctor given you any more information besides advising against a feeding tube?
I'm sorry that you're going through this hard time. Please know that you're not alone and I'll keep you in my thoughts and prayers. Take care.

By susger8 On 2010.12.15 07:33
Another recommendation for involving hospice. They will not only provide care for your mother, but also support for you and your family. I can't say enough good things about them.


By shakingpt On 2010.12.15 09:01
Hospice was there for my Dad when he passed away just a year ago. They were awesome. So supportive and helpful. They were almost like members of the family. My prayers are with you.

By lizettae On 2010.12.15 12:35
Thanks all for helping, I will go and talk with her doctor to see if he would recommend sending hospice out. He suggested I crush her pills in her foods but he hasn't yet stopped the meds. She holds them in her mouth but he doesn't know that yet. I am going to talk with him and see what's the next step.

By Mary On 2010.12.15 14:01
I too highly recommend Hospice. I wish I would have involved them sooner during my Dad's last days. My Dad too just had his pills sit in his mouth because he could no longer swallow them. Due to his condition, we just discontinued the pills. They were only a source of irritation and no good to the condition he was in. My heart and prayers go out to you. It is beyond difficult to watch someone go through their last days in this way. Hugs and blessings, Mary

By lvmymom On 2010.12.15 18:42
Along with having a hospice nurse come, you can also go onto the hospice website. That alone is helpful to you because it helps you see what your role is. How to go through this transition with your mother. It will help with how to say goodbye, what to talk about, how to stroke her forhead, what your mother will be going through, etc. It may even help you decide how important those pills really are at this point, etc.

Your mother is lucky to have you there with her. How lucky we are to have hospice there to help us be the best we can be during this very monumental and important time of life.

By susger8 On 2010.12.16 07:55
Lizettae, sometimes doctors wait too long to recomment hospice. It's not just for the last few weeks of life, it's for the whole period during which a person is moving toward passing. Either they don't want to admit that they are out of treatments to prescribe, or they are afraid of scaring the patient and the family. So, if your mother's doctor puts you off, contact them yourself. You will not regret it.


By parkinit On 2010.12.16 21:54
I agree on the hospice. As long as the patient is given six months or less (information provided by doctor), hospice will be paid for by medicare, and even if the lifespan is beyond 6 months, a doctor must reevaluate and medicare will still pay if it is deemed a short duration of time.

They have been very helpful (we are currently in hospice situation with my dad, who has cancer).

By dkleinert On 2010.12.16 23:56
I am so sorry to hear about what you and your Mom are going thru. In addition to Hospice, look up your county or state Council on Aging. They might be able to send help out that is free. Stay in touch with us - we are here just for you.

By lizettae On 2010.12.28 11:20
Hello everyone and thanks so much for all the support. Just a little update on mom. She is really coughing a lot and choking more on her saliva. The nurse seems to think she has some sort of sinus or allegery thing going on. But anyway the swallowing was difficult before the coughing started. I am crushing her pills because her mouth be so dry now she can't swallow the pills and they sit there and the water she holds in her mouth dissolve them in her mouth (making them nasty and she shows it) before she can get them all down. So the crushing is working so far. She really just stares at me like I have did something to her. She speaks to everyone that says hello to her but me. I used to think she didn't like me but I see it is just a process and I try not to let it bother me. She wont talk to me or anything. She will sometimes smile at me and want to hold my hands. All she really do is sleep unless she is wet (just like a baby again). She isn't eating much or drinking much. Yeah I get those days where I just want to give up but with my faith and belief I know the LORD knows just how much I can bear and I keep pressing farther knowning that the outcome will be for the better.
So once again thank everybody for the support because you can't imagine how much you have helped me through.

By susger8 On 2011.01.03 07:59
You could try giving her the pills in a spoonful of applesauce, either whole or crushed. This works well for people who have dry mouths. My grandmother used to take her pills that way.


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