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Pathfinder

Frustrating day!

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Pathfinder    65

What a day. Hubby had MOHS surgery in January on a basal cell on his outer ear. I had to take him to the Derm doc today because he sleeps or just lies in the bed so much his ear was sore and seeping after healing totally in February. Doc cultured the sites in case of infection and prescribed an ointment if it is Seborrheic Dermatitis. This is just another reminder of how much he is in bed. One of my biggest fears is him getting weaker and then me not be able to care for him.

His Gasteoparesis is so bad right now. He is taking pain Meds two or three times daily more than l would like. He vomits almost daily, sometimes twice. Both these issues have just recently been to this degree, the nausea is ever present and often he refuses to eat. I phone his Gasteoenterologist that he has an appointment with in three weeks, thinking these worsening symptoms deserved a sooner appointment. They made a minor change on the Zofran, suggested an even blander no fat diet, and said it wasn't necessary to move his appointment up as this was all we could do. Thanks a lot doc!! So frustrating! 

And last but not least, remember his Tamiflu drug reaction where he heard a radio playing music? Well, three times lately he has asked me if l have heard non existent sounds. Haven't checked with the Neuro yet, don't have the heart. 

Thanks for reading if you got this far!

 

 

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Feisty Folder    162

I'm sorry. It stinks to watch some one you love struggle so much.   I've got no wisdom only good thoughts and prayers for you. 

Actually maybe one idea. Have the DR's tried dompridone for the nausea? It's a pain getting it from Canada but it's been worth it's weight in gold for me personally. I was even able to reduce zofran which equalled less fatigue. But other than that all I've got for you are my digital "ears"

Hang in there

-Feisty

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miracleseeker    668

I can relate to  your frustration and the feel of helplessness. It seems no one cares like we do right?  Your poor DH is in such distress and you want to make it go away and just let you take care of him in peace and live day by day.   I emailed the neuro about the new PD med that was just approved and he basically said don't bother because my mom is hopeless and the main thing to do now is that she's comfortable.   Well.... my mom is not laying in bed with tubes up her nose but at the same time she's stiff as a board because I know she's under medicated but can't express how she feels. I'm trying my best to get her up and walking around but it is so hard when she weighs a ton from the stiffness.  Add to the fact that I have a sister who does not want to help  so I'm doing this alone.  I have a paid caregiver who does everything by the clock and I know is not walking my mom around the house when I'm at work so it's all up to me.   Where is the compassion and understanding?  The only way people will get it and give a crap  is when it happens to them personally.  

 

 

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otolorin    28

Please talk to a homecare nursing agency for homecare service,especially for a Physical therapist to visit your home and assist with exercising and walking your mom.This could be really hard trying to do it alone.

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genden69    178

Pathfinder, I am so sorry you are going through a difficult time for you and for him.  I know from my experience with DH who is now on hospice, that we as caregivers want everything to be "fixed" when in reality Parkinsons is not a fixable disease.  I don't know how long your DH has been diagnosed with Parkinson's or what stage he is in.  For me the most difficult thing has been to come to an acceptance of the fact that there is nothing more that can be done other than to keep him as comfortable as possible.  I have so desperately wanted doctors to fix everything, but finally I realized as I read the doctor's eyes that it wasn't fixable.  I could have interpreted this as not caring, but I know this isn't true.  It is a doctor knowing what is possible from training and experience.  My advice is to follow the doctor's recommendations.  At your appointment, ask the doctor to level with you about what to expect and how you can handle things. My husband is totally bedridden.  A hospice CNA comes in twice a day to change him and reposition him.  Twice a week they give him a bed bath.  Three times a week a nurse comes in to check him and change the dressing on a bedsore on his tailbone.  I can call a nurse if I need to any time of day or night.  So far I have been able to manage caring for him at home.  Acceptance of the inevitable has been difficult, but ultimately necessary.  Get the best medical advice there is and go from there.  I wish you strength--emotionally and physically.

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Pathfinder    65
9 hours ago, Feisty Folder said:

I'm sorry. It stinks to watch some one you love struggle so much.   I've got no wisdom only good thoughts and prayers for you. 

Actually maybe one idea. Have the DR's tried dompridone for the nausea? It's a pain getting it from Canada but it's been worth it's weight in gold for me personally. I was even able to reduce zofran which equalled less fatigue. But other than that all I've got for you are my digital "ears"

Hang in there

-Feisty

The Gasteoenteroligist mentioned Dompridone but said it wasn't available in the USA so that ended that. How do you get the drug? Do you need a script? What is the cost if you don't mind my asking? Thank you for your support.

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Pathfinder    65
1 hour ago, genden69 said:

Pathfinder, I am so sorry you are going through a difficult time for you and for him.  I know from my experience with DH who is now on hospice, that we as caregivers want everything to be "fixed" when in reality Parkinsons is not a fixable disease.  I don't know how long your DH has been diagnosed with Parkinson's or what stage he is in.  For me the most difficult thing has been to come to an acceptance of the fact that there is nothing more that can be done other than to keep him as comfortable as possible.  I have so desperately wanted doctors to fix everything, but finally I realized as I read the doctor's eyes that it wasn't fixable.  I could have interpreted this as not caring, but I know this isn't true.  It is a doctor knowing what is possible from training and experience.  My advice is to follow the doctor's recommendations.  At your appointment, ask the doctor to level with you about what to expect and how you can handle things. My husband is totally bedridden.  A hospice CNA comes in twice a day to change him and reposition him.  Twice a week they give him a bed bath.  Three times a week a nurse comes in to check him and change the dressing on a bedsore on his tailbone.  I can call a nurse if I need to any time of day or night.  So far I have been able to manage caring for him at home.  Acceptance of the inevitable has been difficult, but ultimately necessary.  Get the best medical advice there is and go from there.  I wish you strength--emotionally and physically.

It has been one year since hubby was hospitalized with severe Gasteoparesis and the tremors and dementia presented while hospitalized. I have no idea what stage the Parkinsonism is now, the fatigue is overwhelming for him, add the stomach pain and nausea and he wants to be in bed most days and now evenings. The dementia has skewed his cause and effect reasoning, telling him he must get out of bed and move is akin to asking him to do any other impossible task. I never argue with him about the apathy, what would that serve? I see him slowly getting weaker, frustrated because he can't or won't self help, and we are back to square one.

I needed to hear your advice regarding the doctor knowing what is possible from training and experience, so well said. He is able to do small outings for coffee several times a week, no longer using a walker, and no huge changes in his dementia status. The hallucinations of a radio were most troubling l must admit, that drug reaction was a horror of full blown constant ranting, hallucinations etc. thank God it is only music he is hearing with no agitation. He has a lot of doctor appointments, he tolerates those well, but he can't contribute to the exam anymore. They exhaust him and he sleeps for hours when we return home.

Thank you for your kindness. I think of you and your husband often, you have my full support as well.

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Pathfinder    65
4 hours ago, miracleseeker said:

I can relate to  your frustration and the feel of helplessness. It seems no one cares like we do right?  Your poor DH is in such distress and you want to make it go away and just let you take care of him in peace and live day by day.   I emailed the neuro about the new PD med that was just approved and he basically said don't bother because my mom is hopeless and the main thing to do now is that she's comfortable.   Well.... my mom is not laying in bed with tubes up her nose but at the same time she's stiff as a board because I know she's under medicated but can't express how she feels. I'm trying my best to get her up and walking around but it is so hard when she weighs a ton from the stiffness.  Add to the fact that I have a sister who does not want to help  so I'm doing this alone.  I have a paid caregiver who does everything by the clock and I know is not walking my mom around the house when I'm at work so it's all up to me.   Where is the compassion and understanding?  The only way people will get it and give a crap  is when it happens to them personally.  

 

 

I am so sorry you have to bear this burden of loving care for your mother alone. Perhaps home PT would be beneficial to her. My husband has done therapy several times, the last time he would be so sick, throw up and he couldn't complete the schedule they had prescribed. His therapy doesn't make much difference, he just reverts back to sleeping the day away and we try again. I appreciate your support. Thank you.

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miracleseeker    668

My mom was kicked out of the daycare center a few years back because she won't follow directions.  They do boring exercises daily that require step by step process and my mom couldn't follow or didn't care to follow.  She just likes to walk and I have told them that before but they didn't have the man power to get someone to walk with her around the center so they decided to drop her.  The PT that was offered through her insurance was not for home care.  She would have to go to there and the effort involved to get her inside and even lift a finger would be more trouble than it's worth.

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otolorin    28

Please call the her insurance company and ask for homecare coverage,because like you said,it is difficult for you to get her out of the house,So she is homebound,thus she will qualify for homecare.Also request that her MD  prescribe homecare service.I hope she will cooperate better,within the comfort of your home.

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Feisty Folder    162
7 hours ago, Pathfinder said:

The Gasteoenteroligist mentioned Dompridone but said it wasn't available in the USA so that ended that. How do you get the drug? Do you need a script? What is the cost if you don't mind my asking? Thank you for your support.

If you want it from a reputable pharmacy you do need a perscription. My neurologist wrote mine. I then faxed it to an online pharmacy in Canada and two weeks later I had it in my hand. It ends up costing me about $20 a month. The biggest hindrance can be finding a USA doctor to write the perscription. But my neurologist has said most MDS are familiar with it. The other thing to be aware of is not to bring in more than a 90 day supply at once, because I've heard customs is more likely to seize it. My gastroenterologist actually used to practice in Canada and waits impatiently for it to be approved here, because he saw how effective it was in his early career. If you do decide to go that route, after a lot of research I choose to use Canadian pharmacy king for myself. The worst side effect I've experienced was a mild headache when I first started it that has since gone away. I was nervous about using a medication that didn't have FDA approval, but for myself I'm so glad I tried it. 

I hope something I just said helps

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Quietstill    450

Pathfinder,

(and genden) Lots of warm thoughts going to you both.  No suggestions, as I have nothing new to add other than my thoughts and support.

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miracleseeker    668
20 hours ago, otolorin said:

Please call the her insurance company and ask for homecare coverage,because like you said,it is difficult for you to get her out of the house,So she is homebound,thus she will qualify for homecare.Also request that her MD  prescribe homecare service.I hope she will cooperate better,within the comfort of your home.

Thanks for the support. You may be new but you sure show a lot of compassion for everyone.   Pathfinder and Genden -  You guys are true caregivers!

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Pathfinder    65

Update: taking Zofran with meals is working so far, no vomiting and less nausea. Before he was taking it as needed, this way calms the stomach down before it gets started. His audio hallucinations have stopped as well! Thanks again for all your support!

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miracleseeker    668
1 hour ago, otolorin said:

You are welcome,we are here to support one another.

Oh...I don't know about that.  I do like your way of thinking though.  :)

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