My condolences to you and your family, dstark.
Condolences on the death of your father, dstark. Your perspective about a long life is appreciated.
Eso- glad you have some support from your brother; this stuff gets lonely when done solo. Every situation is different and you are finding the best way forward.
Dstark, I am so sorry for your loss. Peace.
Sorry for your loss dstark.
In Palliative Care, Comfort Is the Top Priority
Some patients avoid this specialty, which provides relief from pain and discomfort, because they mistake it for end-of-life care.
http://www.nytimes.com/2016/02/16/health/in-palliative-care-comfort-is-the-top-priority.html
So sorry, dstark.
so sorry dstark
dstark, so sorry for your loss. A long life is something to celebrate, though, I hope you have many warm memories to comfort you.
We had a talk with BIL/SIL last night about FIL. We agreed we would change his code at the hospital and nursing home from full code to DNR. Can’t really talk to FIL about filling out a POLST type document - FIL still expects to go home, cook his own meals, start a garden, and resume his old life. But he can’t sit up in bed without help, his heart just can’t supply him with any energy any more. He doesn’t seem to be in much pain. The doctor said that if he ever had to be resuscitated that he would not be likely to ever get off the machines.
BIL had found a place that would provide in-home care for $18 an hour, and was considering moving FIL back home soon. I asked who was going to manage the process, be on call when care givers were late or couldn’t show up, monitor the quality and level of care, etc. He now realizes (thanks, CC Community) that managing the care would be a big job. He may still look into it, but for now FIL will stay in the SNF once released from his current hospitalization.
@somemom, here in Missouri a Highway Patrol officer contacted FIL’s PCP after we sent in the paperwork to DMV, and got a written statement from him that FIL should not drive. The officer came by the rehab center and talked to family - he would have talked to FIL and told him he couldn’t drive, but FIL was so weak by then that we decided it was under control. Besides, FIL doesn’t listen to the doctors who told him he couldn’t drive, not sure why he would listen to the Highway Patrol.
Yes there are doctors willing to take stands on not driving. I am one of them I have told hundreds of them. They are not happy with me but that is OK by me as I feel society needs me to do this. Some states require for doctors to send forms in, others do not. Even if they do not , the doctors can still recommend to patient and family. No different than ‘do not smoke’, ‘do not drive’. I honestly cannot recall a coworker who was reluctant to tell a patient if they felt that they should. Now, family is another story and they are very reluctant frequently, ‘I don’t want dad mad at me’, etc. I tell them I do not mind being the bad guy. Even the most resistant patient usually does not drive after that but remains angry with me. I have had threats to me but, they usually come to the realization that all people- medical and family are on the same page. I find no wavering and persistence is the key. And of course alternate ways to get around.
In our OT occupational therapy department there is a consult that can be done to check for driving ability- they do response times etc but do not take them out driving. It has been a helpful objective evaluation for the patient and is helpful to the staff and family.
Sorry for your loss @dstark . Sorry the hospice nurse didn’t have some standing orders to catheterize your dad, or get orders more quickly.
MIL is now taking a taxi, so that is good news. BIL will talk to her about selling the car to DD. H can get it in June. Otherwise they seem to be holding together OK. Tough being so far away.
Dstark, may your memories of your dad ne a comfort and a blessing.
Condolences dstark. It seems sudden whether it is expected or not.
I will mention that I don’t believe Right To Die legislation is necessary because anyone in continual pain can get the pills they need easily, and government interference in such a private matter is not wanted nor necessary for many. It’s not rocket science for those of us on continual pain meds to figure it out.
One of the residents in the place my mother lives passed away earlier this week. Hospice was involved, I know. Her family was with her most of the time, and after they left for the night, the aides we love sat with her til morning, holding her hand.
Knowing what, how, and when seems like something the hospice nurses should know. No one should have pain in their final hours.
More people are staying on hospice longer. Mostly good, but as with any funding source, once it is in place the race is on to milk it.
http://www.wsj.com/articles/lengthy-hospice-care-boosts-medicare-bills-1455847178
New York Times article on nursing home admission arbitration agreements: http://www.nytimes.com/2016/02/22/business/dealbook/pivotal-nursing-home-suit-raises-a-simple-question-who-signed-the-contract.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=first-column-region®ion=top-news&WT.nav=top-news&_r=0
My mom is one of those who will be on hospice for a long time. I am fighting to KEEP her on because it is the ONLY way I can keep her out of the hospital since she is in assisted living. Now moved to memory care. I am hoping that memory care qualifies as skilled nursing and the long term insurance will pay a little more. (another $40 a day would be her max benefit). She’s been on hospice for 180 days so far. She won’t die for two more years (unless she gets the flu or pneumonia) based on how long it took my Grandma. She has these “dizzy” spells, where she loses cognative ablility, can’t find words, can’t figure out how to walk or swallow. The AL place HAS to call the EMT’s and they haul her to the hospital and perform $20,000 of tests when she is by herself and scared. Last time it happened, the dr said she would die and stopped meds and food, but left the IV in. My brother and I rushed to her side, and when she saw us as wasn’t so scared and I gave her some drinks, she popped right back up. But since the Dr. had made the call that she was dying, I got hospice. She has done the same thing at least twice, maybe three times. She fell and broke her arm . And when the physical therapy lady came to see her after it healed enough to try to move it again, she had a spell and the PT lady was shocked that we’d ordered PT for such a case. Mom couldn’t understand how to lift her arm. But that lasted one day and then up she popped. If hospice hadn’t been involved, the PT lady would have had her in the ambulance and back to being poke and prodded at the hospital.
She lives in OR which has right to die, but demented people don’t get to chose that. For one thing, it is the last six months determination and she could go on for years. She never ever wanted to be where she is, she knew how hard it is, she stayed with her mother at home when Grandma was non-verbal, almost a vegetable. She doesn’t know she is heading there most days though.
I just moved her from Assisted Living to memory care. She was energetic and wandering and they don’t lock the doors in AL, they do in Memory Care. I think it will be a good move for her, she is social and there are lots more aids and lots more open activities. And she can wander all she wants. She is going downhill, oh so slowly. Hospice ordered the rental hospital bed when I was going to buy one. Medicare will pay and at this point I am taking every dollar I can find. I cancelled her private phone; the front desk will take a walk-around phone to her. They will get sick of my calling because I will still call every day, but there was $20 towards their bill. It was an easy move, although physically tough. The first day I went in, everybody seemed happy. After I moved her, then I saw the lady sitting in the chair yelling “HELP” and no aid went to help her for 10 minutes. (She was fine, just sitting in the auditorium and didn’t look like she was in any pain). Still ::shudder::. And the first day, although they evaluated Mom needing all this help, she got herself dressed and went off to breakfast. I arrived just as she was going to sit down… and her teeth werent in … No one had check or noticed!!. The next day, she’d had help dressing, but they forgot her glasses. So a daughter (me) gets the guilts and shakes and morns. But it is still a good place and the best place for her given all the circumstances in my and her life.
We gotta do what we gotta do, and at least she is only 400 miles from me. I got a call while I was there from my old friend’s niece. Friend Nancy just lost it a year ago with paranioa that is partly solved with meds but she wasn’t taking them well and needed a boost. Niece was calling from Minnesota (I am in CA) asking if I could go help Nancy until she could catch a plane out. Nancy has no other family, her husband was killed in the ESL massacre long ago. Niece got here and Nancy was “fine”. Just like my Mom, she needs a touch stone to calm down. I recommend the niece move Nancy, but niece is looking to move here instead. Nancy has some retirement and of course her house here will afford care for a while, but it would last longer in MN, I think. I couldn’t do it so far away!
Sorry for the ramble, I don’t have a lot of outlets. My H is sick of my doing it and living with it. Best friend’s mom died and is sick of hearing about MY mom, Nancy was who I complained to, she doesn’t worry about it! My brother is supportive, but he has his own guilt to worry about so I don’t need to load him up with mine. He would have been in the trenches with moving her if I would have waited a week, but his FIL was getting married the weekend I chose. I had to squeeze it in between some volunteer activity I am involved with, plus I wanted her to be there for a month before I go out of the country. AND the Memory Care had a room open, so I wanted to snap it up. The AL place and the memory care place are the same company, but they act like independent operators. But every one on both sides REALLY supported this move, so that made it a lot easier.
I am sure all you in the trenches understand my choices, and people not living it think I am insane.
Hugs to all of us getting through this.
Sending a virtual hug @esobay. Thank heavens for the wonderful people who frequent this thread.
Another virtual hug -
I hope they view you as a caring daughter - they should!
Might her “in and out” periods be side effects of some medication ?
@esobay-All the best for you and your mother in this transition. Hope that being out of the country for awhile is a vacation. You must need one.
Not all situations are clear cut and the type of initial ambiguity you describe only makes elder care harder. It does sound like upping her care level was the best all around. That is all we can really do: play the hands we are dealt as caregivers the best way possible with the info at hand. Some elders get a rough combination of debilitation and longevity. No guilt for having the care match the needs, including those of you and your husband.
@esobay I am so sorry that you are going through this. It’s just so hard. (((((hugs)))))! That and an ear (well, I guess an eye), is all I and we (?) can offer, but we’re here for you.