Parent w/ Parkinsons, next steps...

[Anonymous]

OP, my dad has Parkinson’s and we are in a similar situation with my mom as the primary caretaker. He is declining but not quite to the point of your dad. I just wanted to send virtual hugs and tell you how lucky both of your parents are to have you. It sounds like you have been a wonderful daughter to both of them.

[Anonymous]

Anonymous wrote:

Anonymous wrote: OP here-unfortunately I am not local to the board. He was transported yesterday to a local facility and I already want to move him I'm hoping for a better impression in the light of day today (it was near evening when he was brought there). It was a difficult day.

Give it a few days. Be assertive for the things he needs as well!

We did things like bring in his favorite music and somethings from home to make him feel more comfortable.

[Anonymous]

Thank you pps' for your encouragement I'm at work today how my lunch break right now, but mom is at the facility and they seem to be doing a lot today, he has already had wound care and the thorough assessment by PT and they planned out the care meeting for next week plus he's had breakfast and lunch so I guess the daytime is a little more active than the evening that I saw yesterday.

I did ask my mom if she wanted to move him, I told her I'd find a place but she does not want to and I guess that's fine, as long as he's cared for and she's okay with it then I guess that's okay. So the physical therapist did tell her that they don't expect to see any improvement really as far as walking and essentially he's going to be bed bound and need total care, which that's where he's at right now. They'll do therapy , I mean any improvement is something. But I am glad that they seem to be being honest with us and I actually did expect that assessment.

I told my adult kids about it and for the ones that live out of state they may wish to plan visits sooner than later, my kids are very close to my parents. Not that they have to rush here but I wanted them to have the information they need to plan accordingly. Next week we'll have a care meeting at the facility and I guess figure out what we're going to need at their house like a hospital bed and how much care and arranging that and all that. But for the moment he's fine and I guess we can just catch our breath.

[Anonymous]

Anonymous wrote:Thank you pps' for your encouragement I'm at work today how my lunch break right now, but mom is at the facility and they seem to be doing a lot today, he has already had wound care and the thorough assessment by PT and they planned out the care meeting for next week plus he's had breakfast and lunch so I guess the daytime is a little more active than the evening that I saw yesterday.

I did ask my mom if she wanted to move him, I told her I'd find a place but she does not want to and I guess that's fine, as long as he's cared for and she's okay with it then I guess that's okay. So the physical therapist did tell her that they don't expect to see any improvement really as far as walking and essentially he's going to be bed bound and need total care, which that's where he's at right now. They'll do therapy , I mean any improvement is something. But I am glad that they seem to be being honest with us and I actually did expect that assessment.

I told my adult kids about it and for the ones that live out of state they may wish to plan visits sooner than later, my kids are very close to my parents. Not that they have to rush here but I wanted them to have the information they need to plan accordingly. Next week we'll have a care meeting at the facility and I guess figure out what we're going to need at their house like a hospital bed and how much care and arranging that and all that. But for the moment he's fine and I guess we can just catch our breath.

Sounds like a good day! You mentioned wound care. Is there a pressure sore? Stay very on top of that! They can progress very quickly in a fragile person.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you pps' for your encouragement I'm at work today how my lunch break right now, but mom is at the facility and they seem to be doing a lot today, he has already had wound care and the thorough assessment by PT and they planned out the care meeting for next week plus he's had breakfast and lunch so I guess the daytime is a little more active than the evening that I saw yesterday.

I did ask my mom if she wanted to move him, I told her I'd find a place but she does not want to and I guess that's fine, as long as he's cared for and she's okay with it then I guess that's okay. So the physical therapist did tell her that they don't expect to see any improvement really as far as walking and essentially he's going to be bed bound and need total care, which that's where he's at right now. They'll do therapy , I mean any improvement is something. But I am glad that they seem to be being honest with us and I actually did expect that assessment.

I told my adult kids about it and for the ones that live out of state they may wish to plan visits sooner than later, my kids are very close to my parents. Not that they have to rush here but I wanted them to have the information they need to plan accordingly. Next week we'll have a care meeting at the facility and I guess figure out what we're going to need at their house like a hospital bed and how much care and arranging that and all that. But for the moment he's fine and I guess we can just catch our breath.

Sounds like a good day! You mentioned wound care. Is there a pressure sore? Stay very on top of that! They can progress very quickly in a fragile person.

Yes, he has a pressure wound on his heel that has been under treatment for some time now, it had gotten bad but is much better now. He also sustained a wound on his back in the fall last week which they are watching closely. I'm glad the facility was right on it, that gave me a better impression of the place than I had at first.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you pps' for your encouragement I'm at work today how my lunch break right now, but mom is at the facility and they seem to be doing a lot today, he has already had wound care and the thorough assessment by PT and they planned out the care meeting for next week plus he's had breakfast and lunch so I guess the daytime is a little more active than the evening that I saw yesterday.

I did ask my mom if she wanted to move him, I told her I'd find a place but she does not want to and I guess that's fine, as long as he's cared for and she's okay with it then I guess that's okay. So the physical therapist did tell her that they don't expect to see any improvement really as far as walking and essentially he's going to be bed bound and need total care, which that's where he's at right now. They'll do therapy , I mean any improvement is something. But I am glad that they seem to be being honest with us and I actually did expect that assessment.

I told my adult kids about it and for the ones that live out of state they may wish to plan visits sooner than later, my kids are very close to my parents. Not that they have to rush here but I wanted them to have the information they need to plan accordingly. Next week we'll have a care meeting at the facility and I guess figure out what we're going to need at their house like a hospital bed and how much care and arranging that and all that. But for the moment he's fine and I guess we can just catch our breath.

Sounds like a good day! You mentioned wound care. Is there a pressure sore? Stay very on top of that! They can progress very quickly in a fragile person.

Yes, he has a pressure wound on his heel that has been under treatment for some time now, it had gotten bad but is much better now. He also sustained a wound on his back in the fall last week which they are watching closely. I'm glad the facility was right on it, that gave me a better impression of the place than I had at first.

Probably needs a special kind of hospital bed with an air mattress. And he needs to be turned every one to two hours. I would tell you that we were told by medical professionals that my dad with Parkinson’s needed to be bedbound. My siblings are doctors, and they said, no. They got a special wheelchair and a Hoyer left and recliner and his home caregivers m move him between the bed (at night) the recliner, his wheelchair that he eats in etc. Staying in bed all day is going to make it hard to avoid bed sores. It’s good to vary furniture. We got an electric hoyer lift to help moving him.

Getting all the equipment and training everyone on how to use it was quite the hassle though.

[Anonymous]

Thank you PP for this info-I'm making notes for the care plan meeting next week to discuss this.

[Anonymous]

Well, yesterday was a doozy. Mom had her appt with the pulmonologist, and they are going to do a needle biopsy of the nodule in her lung, which apparently isn't just scar tissue as I had hoped. Dr did say it was unlikely to be cancer. I will take FMLA for that procedure to take her.

I was at work (brother took her to dr) and early afternoon Mom called me and send a video-my Dad was mumbling incoherently and having like arm shakes (involuntary movements I guess). I told her to get the nurse and dr and I left work in tears to drive there. In the time it took me to get there (long commute) they assessed him and determined he wasn't having a stroke or seizures which is what I thought might be happening. The rehab staff is in agreement that this is the final stages...when I got there they had got him sitting up which helped some but he no longer speaks words and doesn't seem to know who we are. He also is hallucinating. He is still drinking from a straw but didn't seem interested in eating, we've been feeding him and he would open his mouth but yesterday he only took like two spoonfulls (the food is good, I did check it). He did however take his pills the nurse brought, so we will continue to give them as long as he can (nurse basically tossed them in his mouth, it worked).

So, we did the DNR stuff and the focus now will be hospice-care meeting is next week so we'll set stuff in motion then I guess. The decline was so fast and so scary yesterday, but he's stable for the moment. The facility dr will see him with my mom present today and hopefully she will give us more insight...I'm no expert but I think we are closer to the end than I realized, particularly because he's ceasing eating. We will not be doing a gastro tube or iv. Mom seems to have accepted things and says she really just wants him comfortable, and at home, and if that is possible I will do my best to facilitate that.

[Anonymous]

Anonymous wrote: Well, yesterday was a doozy. Mom had her appt with the pulmonologist, and they are going to do a needle biopsy of the nodule in her lung, which apparently isn't just scar tissue as I had hoped. Dr did say it was unlikely to be cancer. I will take FMLA for that procedure to take her.

I was at work (brother took her to dr) and early afternoon Mom called me and send a video-my Dad was mumbling incoherently and having like arm shakes (involuntary movements I guess). I told her to get the nurse and dr and I left work in tears to drive there. In the time it took me to get there (long commute) they assessed him and determined he wasn't having a stroke or seizures which is what I thought might be happening. The rehab staff is in agreement that this is the final stages...when I got there they had got him sitting up which helped some but he no longer speaks words and doesn't seem to know who we are. He also is hallucinating. He is still drinking from a straw but didn't seem interested in eating, we've been feeding him and he would open his mouth but yesterday he only took like two spoonfulls (the food is good, I did check it). He did however take his pills the nurse brought, so we will continue to give them as long as he can (nurse basically tossed them in his mouth, it worked).

So, we did the DNR stuff and the focus now will be hospice-care meeting is next week so we'll set stuff in motion then I guess. The decline was so fast and so scary yesterday, but he's stable for the moment. The facility dr will see him with my mom present today and hopefully she will give us more insight...I'm no expert but I think we are closer to the end than I realized, particularly because he's ceasing eating. We will not be doing a gastro tube or iv. Mom seems to have accepted things and says she really just wants him comfortable, and at home, and if that is possible I will do my best to facilitate that.

I’m so sorry OP. We’re riding this roller coaster with you so please keep us posted on how you’re doing.

[Anonymous]

Anonymous wrote: Well, yesterday was a doozy. Mom had her appt with the pulmonologist, and they are going to do a needle biopsy of the nodule in her lung, which apparently isn't just scar tissue as I had hoped. Dr did say it was unlikely to be cancer. I will take FMLA for that procedure to take her.

I was at work (brother took her to dr) and early afternoon Mom called me and send a video-my Dad was mumbling incoherently and having like arm shakes (involuntary movements I guess). I told her to get the nurse and dr and I left work in tears to drive there. In the time it took me to get there (long commute) they assessed him and determined he wasn't having a stroke or seizures which is what I thought might be happening. The rehab staff is in agreement that this is the final stages...when I got there they had got him sitting up which helped some but he no longer speaks words and doesn't seem to know who we are. He also is hallucinating. He is still drinking from a straw but didn't seem interested in eating, we've been feeding him and he would open his mouth but yesterday he only took like two spoonfulls (the food is good, I did check it). He did however take his pills the nurse brought, so we will continue to give them as long as he can (nurse basically tossed them in his mouth, it worked).

So, we did the DNR stuff and the focus now will be hospice-care meeting is next week so we'll set stuff in motion then I guess. The decline was so fast and so scary yesterday, but he's stable for the moment. The facility dr will see him with my mom present today and hopefully she will give us more insight...I'm no expert but I think we are closer to the end than I realized, particularly because he's ceasing eating. We will not be doing a gastro tube or iv. Mom seems to have accepted things and says she really just wants him comfortable, and at home, and if that is possible I will do my best to facilitate that.

Just wondering...could it be a medication issue? Seems very coincidental with the move to rehab. Could they have forgotten a dose or gotten one wrong?

[Anonymous]

Anonymous wrote:

Anonymous wrote: Well, yesterday was a doozy. Mom had her appt with the pulmonologist, and they are going to do a needle biopsy of the nodule in her lung, which apparently isn't just scar tissue as I had hoped. Dr did say it was unlikely to be cancer. I will take FMLA for that procedure to take her.

I was at work (brother took her to dr) and early afternoon Mom called me and send a video-my Dad was mumbling incoherently and having like arm shakes (involuntary movements I guess). I told her to get the nurse and dr and I left work in tears to drive there. In the time it took me to get there (long commute) they assessed him and determined he wasn't having a stroke or seizures which is what I thought might be happening. The rehab staff is in agreement that this is the final stages...when I got there they had got him sitting up which helped some but he no longer speaks words and doesn't seem to know who we are. He also is hallucinating. He is still drinking from a straw but didn't seem interested in eating, we've been feeding him and he would open his mouth but yesterday he only took like two spoonfulls (the food is good, I did check it). He did however take his pills the nurse brought, so we will continue to give them as long as he can (nurse basically tossed them in his mouth, it worked).

So, we did the DNR stuff and the focus now will be hospice-care meeting is next week so we'll set stuff in motion then I guess. The decline was so fast and so scary yesterday, but he's stable for the moment. The facility dr will see him with my mom present today and hopefully she will give us more insight...I'm no expert but I think we are closer to the end than I realized, particularly because he's ceasing eating. We will not be doing a gastro tube or iv. Mom seems to have accepted things and says she really just wants him comfortable, and at home, and if that is possible I will do my best to facilitate that.

Just wondering...could it be a medication issue? Seems very coincidental with the move to rehab. Could they have forgotten a dose or gotten one wrong?

Mom has monitored the meds and feels they're doing it correctly. But we will go over it again with the Dr today.

[Anonymous]

OP here-yesterday was another heck of a day.

Dad has been just out of it, talking incoherently, involuntary movements-we see him daily (Mom does, on workdays I don't because of my schedule except I saw him Thursday after leaving work in a panic because of his decline) and Mom sent me a pic of a wound/scrape on his shins. He doesn't walk-how does one get those? I believe it was a fall! No one said anything to us. I called the facility (I was at work, I work most Saturdays) and they were like, oh we'll investigate and the wound nurse will look at it Monday. 'it's Saturday' I was enraged!

Work was over, I left and immediately went to the facility. They were like, oh we'll check him for a UTI monday 'again, it's saturday'. My poor mom was overwhelmed and my dad was clearly suffering-I said, I'm calling his primary dr. Dr said 'take him to 'local hospital' ER and don't bring him back there!' I then told them to arrange transport or I was calling 911. I wasn't 'asking' I was 'telling', I was furious. They did and we went to the ER where he was found to have a UTI and was admitted! He did not have a stroke or seizures, thankfully.

Needless to say he is NOT returning to that facility. I'll work with case management to figure out something else. I don't know how much capacity he will regain after the UTI is cured, but once we have that baseline we'll figure out next steps.

[Anonymous]

Just wanted to say you are doing an amazing job advocating for your father (and on behalf of your mother). It’s tough, tiring, and can feel like whack a mole. There aren’t easy answers or answers that feel good, so you just have to trust your gut.

[Anonymous]

Anonymous wrote:Just wanted to say you are doing an amazing job advocating for your father (and on behalf of your mother). It’s tough, tiring, and can feel like whack a mole. There aren’t easy answers or answers that feel good, so you just have to trust your gut.

Thank you! I really did have to trust my gut, I just KNEW something was wrong and it wasn't 'just parkinsons'. We saw Dad today at the hospital and after only 12 hrs so far (at the time) of antibiotics, he is speaking english (not jibberish), recognized and greeted us, and even told a few coherent stories (not on topic, but that's ok lol). Thankfully, he does not remember anything of the facility. The hospital has him NPO until they do a swallow assessment tomorrow and we hope to see the case manager as well. And his nurse agreed with me that his leg wound looked fall related. I consider today to be an upswing day! And now at 6:45 I'm getting in bed LOL I am exhausted.

[Anonymous]

Anonymous wrote:OP here-yesterday was another heck of a day.

Dad has been just out of it, talking incoherently, involuntary movements-we see him daily (Mom does, on workdays I don't because of my schedule except I saw him Thursday after leaving work in a panic because of his decline) and Mom sent me a pic of a wound/scrape on his shins. He doesn't walk-how does one get those? I believe it was a fall! No one said anything to us. I called the facility (I was at work, I work most Saturdays) and they were like, oh we'll investigate and the wound nurse will look at it Monday. 'it's Saturday' I was enraged!

Work was over, I left and immediately went to the facility. They were like, oh we'll check him for a UTI monday 'again, it's saturday'. My poor mom was overwhelmed and my dad was clearly suffering-I said, I'm calling his primary dr. Dr said 'take him to 'local hospital' ER and don't bring him back there!' I then told them to arrange transport or I was calling 911. I wasn't 'asking' I was 'telling', I was furious. They did and we went to the ER where he was found to have a UTI and was admitted! He did not have a stroke or seizures, thankfully.

Needless to say he is NOT returning to that facility. I'll work with case management to figure out something else. I don't know how much capacity he will regain after the UTI is cured, but once we have that baseline we'll figure out next steps.

You are doing the advocacy job very well. My father's skilled nursing doctor (we had to use their doctors) said my dad could not have an infection because he had just finished a course of antibiotics. We got him to the hospital...with a UTI, pneumonia and sepsis. I hope he continues to respond and rally.