Parent w/ Parkinsons, next steps...

[Anonymous]

Anonymous wrote:

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.

Ironically, he has rallied so well that at midnight, he decided to 'go home' and fell out of the hospital bed! They did have it set to the lowest level and pads on the floor and an alarm, and they called me at midnight to say they think he's fine but will do a catscan. In my state, they cannot restrain patients into bed. Mom is going to talk to the hospital today about sedating him at night or something and I'm taking my bleary-eyed self to work.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

Ironically, he has rallied so well that at midnight, he decided to 'go home' and fell out of the hospital bed! They did have it set to the lowest level and pads on the floor and an alarm, and they called me at midnight to say they think he's fine but will do a catscan. In my state, they cannot restrain patients into bed. Mom is going to talk to the hospital today about sedating him at night or something and I'm taking my bleary-eyed self to work.

This is a problem. While I understand the laws against restraints...it means that many elderly people have to be sedated when they are in bed since there is never enough staff for a person to sit with them. This leads to sedation during the day as well...more time in bed....pressure sores...less use of muscles. I do not have an answer but just keep it in mind.

[Anonymous]

Thinking of you and your dad!

[Anonymous]

Anonymous wrote:Thinking of you and your dad!

Thank You! So, this past week was exhausting, but-he was released from the hospital on Wed and transported to a different rehab. I had a better (but not great) first impression of this one. They put these inflatable 'bumpers' on his bed, kind of like what you see in bowling allies, and he's not fallen out. He's on Seroquel which may be helping too. We see him daily and Mom is keeping him stocked with m&m's and Dr Pepper, his favorites.

Mom still wants him to come home after rehab. I don't think he is going to improve much if at all...but if that's what she wants then I'll try to help make it happen. We'll have a care meeting at the rehab week after next and see what they say. I think he should stay permanently in a skilled nursing facility, for his safety and my mom's. I did get Mom to agree for us (me and her) to meet with an elder care atty to plan for medicaid/spend down and how that works.

Even though both folks signed Living Wills back years ago when dad was cognizant (same atty that we're seeing soon) Mom really struggled with signing the DNR...I guess it feels so real now. I and the medical staff did explain what resusitation would look like-broken ribs and intubation. She did sign it, and feels better now after, but she hesitated. I gently said that if Dad's heart stops, then it's a natural peaceful death, and we don't want him to suffer crushed ribs, ect.

Mom has the needle biopsy of the nodule in her lung in 2 weeks. She's hardly had time to worry and think about it with all this going on. I'll be glad to get it behind her and hopefully (dr was positive about it) cleared. I'd love a days-long nap at this point, but that'll never happen LOL

[Anonymous]

Thanks for the updates, OP. I hope you're taking care of yourself and can find some time to nap, eat right, think of other things. This is a difficult time for your mind and body.

[Anonymous]

OP …in re: DNR.

Make certain that the actual order is printed out and available! You need to have a copy, as does your mom.

Awful story to share but my mom recently died under the care of a rescue squad. They arrived and couldn’t find her DNR and neither could her home health aide. It wasn’t readily available and she lived alone in a care community apartment. I won’t go into further details but blessedly she died while I found a downloaded copy on my phone. The rescue squad granted is amazing patience understanding.

I’m still not certain why her DMR wasn’t posted with all of her other emergency info.

[Anonymous]

Anonymous wrote:OP …in re: DNR.

Make certain that the actual order is printed out and available! You need to have a copy, as does your mom.

Awful story to share but my mom recently died under the care of a rescue squad. They arrived and couldn’t find her DNR and neither could her home health aide. It wasn’t readily available and she lived alone in a care community apartment. I won’t go into further details but blessedly she died while I found a downloaded copy on my phone. The rescue squad granted is amazing patience understanding.

I’m still not certain why her DMR wasn’t posted with all of her other emergency info.

I'm sorry about the loss of your mom, PP.

I appreciate the reminder to have a copy in my possession-I hadn't thought about that. I will get that asap.

[Anonymous]

Anonymous wrote:Thanks for the updates, OP. I hope you're taking care of yourself and can find some time to nap, eat right, think of other things. This is a difficult time for your mind and body.

Thank you-I saw him today after church, and right now I'm laying in bed, scrolling the boards and eating those mini marshmallows that are like the ones in Lucky Charms : ) that is my self care today lol

[Anonymous]

OP here...Dad's battle with Parkinsons ended today.

He developed an UTI yesterday and had blood in his urine, and despite treatment, he declined so rapidly that this morning he was unresponsive. We had him transported to the ER, and his blood pressure was so terribly low...meds didn't bring it up. At this point, they offered to bring in the hospice person. After discussing the alternative (ICU, meds that probably would not work, ect) and considering that Dad had said (when he was cognizant) that he did not want to be in an ICU situation-we decided to enroll in hospice. They had a room at the local place and transported him there, where he was made comfortable and mom, me and my adult kids gathered. He died peacefully about 10 hours after arriving.

It's been a whirlwind today, but he's not suffering any more.

[Anonymous]

Peace be with you and him.

[Anonymous]

Anonymous wrote:Peace be with you and him.

Thank you. I'm so grateful that me, mom and my kids got to be with him today.

[Anonymous]

So sorry for your loss. Glad that family could gather and it was peaceful...

[Anonymous]

OP, my heart goes out to you. I am so sorry for your loss. I am glad the final hours were peaceful and it sounds like that's what he wanted as well. I Hope your mom is doing okay and you can support her now....

My father has Parkinsons and his wife (my stepmom) is in denial (she won't let him even use a cane, says its 'all in his head,' and he needs to 'work on his balance'--since his last fall/concussion I am hoping she has relented but I dont know.). I've advocated for more in home care (there's plenty of money) and some things that would help, like curbless showers, seats in showers, cleaning the clutter so there are not boxes in the hallways, etc, but it all falls on deaf ears. It's so hard. at a certain point, all I can do is be with him when he needs me to be there, and try and advocate for a calm, peaceful end when its time.

[Anonymous]

I am so sorry for your loss, and i hope your dad’s memory is a blessing for you and your family. I truly hope you come to a place of peace and also that your mom can take care of her health needs and that she will be ok.

[Anonymous]

Anonymous wrote:OP, my heart goes out to you. I am so sorry for your loss. I am glad the final hours were peaceful and it sounds like that's what he wanted as well. I Hope your mom is doing okay and you can support her now....

My father has Parkinsons and his wife (my stepmom) is in denial (she won't let him even use a cane, says its 'all in his head,' and he needs to 'work on his balance'--since his last fall/concussion I am hoping she has relented but I dont know.). I've advocated for more in home care (there's plenty of money) and some things that would help, like curbless showers, seats in showers, cleaning the clutter so there are not boxes in the hallways, etc, but it all falls on deaf ears. It's so hard. at a certain point, all I can do is be with him when he needs me to be there, and try and advocate for a calm, peaceful end when its time.

Op here-I'm sorry that your dad's wife is putting him at risk with her denial of the situation. My mom had some denial too (I've posted here over the years about that) but it was more along the lines of denial of where he was in the journey. She never blamed him, I'm sorry your dad is enduring that. Does she have any health issues like cognitive issues? Is your dad still cognizant enough to at least give hippa permission so you could speak to his dr? I would try to give his primary dr a heads up that he's not able to be safe at home at this time. If he's already fallen to the point of concussion, there will be more falls and at some point, hospital admission. It sounds like its at the point where you (and siblings if you have them) may have to sort of stage an intervention so that your dad can at least get needed mobility devices at home (he probably needs a rollator at this point), and the house made navigatiable (removal of clutter/boxes, throw rugs, ect) and some basic bathroom safety (grab bars and a shower seat).

This is a tough situation, pp, I'm sorry.