For those who care for someone with Parkinson's disease
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The last week has been very hard. DH is getting very weak and his voice is almost impossible to either hear or understand. He has eaten very little for about a week. This time last week he was having loose BMs and then diarrhea. Since then he has eaten little. This morning he ate almost 2 small muffins and a banana. Then nothing all day. Water when I put his meds in his PEG tube. This evening I finally convinced him to let me give him a bottle of Ensure via the PEG. I know he is dehydrated. I know the lack of food has made him weak. Of course each day is worse than the one before. The dehydration is causing confusion and declining mental status. He is so weak I can barely get him from chair to bed, etc. I can not lift him. He can not help. What is my next step? Do I take him to the ER to see if he needs to be admitted for hydration (also potassium possibly low) or UTI? or whatever? Or do I try to see his primary doctor tomorrow? He has an appointment with his neurologist Thursday (today is Tuesday) but it is supposed to be for a follow up on a study he participated in 3 months ago. I'll probably cancel our dental cleaning appointments tomorrow. If they admit him to the hospital will they maybe use rehab after to try to get him back on his feet? Last August he was admitted for dehydration and aspiration pneumonia. After 3 days they sent him straight home. He was weak and unable to move himself like now. I had to take him back to his doctor for a face to face in order to get home health care - nurse, OT, PT and aide. It was the hardest struggle ever. Well, this week is like that. Where do I go from here? Seriously, I can't keep this up. Strained my back today and once when he couldn't stand his knee came down on top of my foot. Bruised and sore now. I've cried several times today. On our 31st anniversary. |
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Adding that I find myself telling him he has to help me! And knowing at the same time that he can't. His legs won't support his weight. He literally can not talk any louder or more clearly. What to do.... |
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I wish you were having a celebration for your anniversary. I remember how lonely I felt when my hubby didn't remember it was my birthday. We just never know when things are going to change with this darn PD. I really feel for you. It's so difficult trying to do everything for them and worry about what you should do when things get worse. My hubby had his 3 month check up appt today with his primary care doctor. All his blood work was perfect, blood pressure perfect. The doctor said he was in excellent health but for the PD. Sad that PD has robbed him of enjoying life. My hubby is getting weaker also and it's getting really difficult getting him up out of bed and holding him up so he doesn't fall. If I call the neurologist for advice he will probably want to put him on another pill. I just don't know what to do either. Do you have a transport chair or wheel chair? We have one and have only used it when my hubby can't seem to walk. I almost feel like the most frustrating part of this is now he just doesn't communicate. Hugs to you, I'll be thinking about you. |
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Called his primary this morning who said yes go to ER. BP was very low. 58/47 Dehydrated Admitted for overnight. Will see his primary here tomorrow. The ER Doctor recommend rehab at discharge. I know he has to be inpatient 3 days before Medicare will pay for rehab. I also don't know how he will react to going to rehab if that happens. But I also don't know how I'll handle him if he goes home without being able to stand. |
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Admitted on Wednesday for dehydration. On Thursday morning apparently mucus blocked his airway and he coded. His primary doctor just happened to be in the next room. Chest compressions got his heart started back. He's now on a ventilator and sedated. Today they will try to see if he can breath on his own. Scariest day if my life. Yes I cried uncontrollably. Thank God for hospital staff who know what to do. |
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I'm so sorry this is happening. How sad and scary that must be. I always worry about all that mucous that collects in my hubby's throat. I listen to him at night trying to bring it up and often wake him up to make sure he's okay. It was a good thing it happened in the hospital where they knew what to do. I hope he's going to be okay. Sending you BIG HUGS and good thoughts. |
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| What an incredibly difficult situation. You must have been terrified. Sending lots of positive energy and thoughts of comfort to both you and your husband. |
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| Pinki, hope this finds you well and your husband improving. Been thinking about you both. Rest when you can and hugs to you both. Jane |
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| They removed the vent today. He's breathing on his own. There was still mucus to remove. He has a patch on his neck that dries up secretions. No idea what happens when he doesn't have that. More secretions may cause respitory arrest again. |
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pinki, I'm so sorry for this upset for your husband and yourself. My Dad was in hospital recently and had thick mucous that collected in his throat, very uncomfortable but not as bad as what you describe. the nurses were able to suction it out gently. (she told me it was not "deep suction" but I do not know what the other kind is called.) I'm wondering if this is something they could teach you to do at home... but maybe only a skilled nurse would do. If his condition is such that you are not able to care for him at home when he is discharged, I believe they must place him in a nursing home, maybe for a few weeks. Medicare would cover his bills for a certain length of time (if that is his insurance) and then there might be copays. It is very difficult not knowing what may happen next. You and your dear one will be remembered in my thoughts and prayers. |
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Yes Mary. He will go to a SNF to get him back in his feet. We haven't told him that yet. Don't want tonites him more than he already is about not going home right now. He is getting speech/swallow therapy and PT. he could not get on his feet with the PT today so he has a long way to go I'm afraid. The mucus is white and very thick. Yes they suction. Even going thru his nose to get deep so as not to gag him. We have a suction machine at home that we use in his mouth. Right now he has aspiration pneumonia from this mucus so he is being treated for that. He is being difficult. When something I say isn't what he wants to hear he says go away or get out of here.  Sundowners takes on at sun down and he gets wild even with heavy medications. At day break he relaxes and sleeps normally. There is still the chance that the mucus will cause respiratory arrest again. Yes Medicare and his supplement plan will pay for SNF. Thank you for your care and concern. If you can get a suction machine for home I'd do so. We have one that Medicare paid for and another that I bought thru Amazon or eBay so I didn't have to keep carrying from bedroom to living room. Same with nebulizer. |
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Pinki I'm glad your hubby is better. I've not been told by anyone that a suction machine could be bought for the home. Now I'm going to see about getting one. At night especially I hear all that mucus in the back of his throat and when he coughs it sounds like a lot. I feel kinda dumb that I didn't know about the machine. It's just so depressing to hear about what's to come. I was thinking this morning how weak my hubby has become and how I keep needing to find more and more things to help care for him. You've been in my thoughts and I'll continue to send you and your hubby good thoughts and prayers. |
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Dear Pinki, thank you for telling me about the suction machine. I had no idea about that and will look into it. Does your husband have a humidifier by his bed? The time I was hospitalized for asthma, my doctor explained the importance of moisture in the air to loosen congestion. Lately I've been having more difficulty to breathe and looking for ways to feel better. I realized that the A/C in our LR is taking a lot of water out of the air when it is on. Best wishes and prayers for you and yours. |
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He had a set back. We're still in the hospital - now they are just keeping him comfortable....waiting for the end. It's been over 24 hours since the doctor said there is nothing else they can do - except put him back on the ventilator. That is not what he wanted so... I wish you all well and pray each of you continue to fight this evil beast that is OD. |
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| Oh Pinki, I'm so sorry things are like this. I'm keeping you and your hubby in my prayers. |
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| I am so sorry, Pinki. Praying that comfort and grace surround you both. |
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| Oh, Pinki, I am so sorry. May you find comfort and rest throughout this PD journey. Bless you and your strength. I came online just to see how you both are doing. (Hugs) Jane |
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Dear Pinki, you and your dear husband are in my thoughts and prayers at this difficult time. Both of you have fought the good fight together. He is blessed to have you by his side. Even if he is not able to respond, he still hears you now. The sound of your voice is giving him peace. God bless you. mary |
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| Pink, my prayers are with you and your husband. Be strong. Mak |
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Dear Pinki, You and your loved one have been in my thoughts for many days now. Hoping for a happy outcome and I wish you both peace whatever happens. Hugs |
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| I was so sorry to read of this, and hope that you and your husband find peace during this difficult time. |
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| Thinking of you and praying for peace for both of you. |