Parents caring for the parent support thread (Part 1)

In addition to his heart failure and kidney failure, he also has Parkinson’s and diabetes. While the Parkinson’s has been slow progression, most likely the swallowing issue is due to that and his huge hiatal hernia.

The Palliative care doc ordered him liquids today, but he may have drank too much, too quickly as he felt bad later. He also talked with Palliative doc and may have realized he didn’t have the 6 months to a year he imagined. Then the speech person came back and told him again if he ate he would die. After that the Hospice social worker came to talk to him. It was a lot of information to process at one time. Then he hears my mother talk able how much private duty care is going to cost and I know that worries him. What he doesn’t know if that my brother that only takes and never gives offered to give $20K toward the pot for him the have a private sitter. So he is going to I’m home Hospice Thursday as we have to get the equipment delivered tomorrow.

What is he able to drink? Can he drink some things that sustain him?

I wonder if it is not possible to do a feeding tube in the abdomen due to the hernias?

If the swallowing is from Parkinson’s, does that mean that improvement is impossible?

Is he going to a hospice facility? Or home with an aide?

The picture in its entirety makes hospice a godsend. I hope they are helpful in every way. Do you or your mother have a health care proxy, and do any of you have Power of Attorney so you can make decisions for him if needed?

We are going to in home hospice with 24 hour sitters. He can take small sips, but coughs with each swallow. This will never reverse, especially as he gets weaker.

He had a horrible night and was/is disoriented. Bad nurses last night, so not a lot of help. We have been asking for something for the agitation since 5:00 pm yesterday; still no response to that or a cup of ice chips! I just got here as I had to do things at their apartment, so marched myself up to the nurses station and asked that the nurse come to talk to me; let’s she if that happens.

Dad has a living will and is a DNR. Once we get home, Hospice will take care of everything and it will be better. They would have released him today, but the home equipment is not coming until this afternoon and I didn’t want to arrive home in the evening. We are aiming for mid morning tomorrow.

Sending a hug.

Well the agitation is most likely due to the pain; his hernia is back out and he may have dead bowel or blood which is causing the swelling around his testicles he has been complaining about for 2 days. Heading for a CT to see what is there.

Delightful Hospitalist came by and examined dad while my husband, who is a physician was there. They discussed meds and it was decided even with the chance of aspiration, dad will get pain meds or Ativan. The nurse still didn’t want to give it to him; again repeated dad didn’t need them ?

I am heading back now after being at the apartment for equipment delivery.

2snowball, sending strength waves of energy. hugs.

We found hospital staff didn’t want to do Ativan because it increases confusion. Maybe the hospice folks can help with that. Are the pain meds via IV? Sometimes things are given orally but under the tongue with a plastic syringe.

I brought Dad home from rehab yesterday. :slight_smile: I fly home tomorrow.

SO happy with our advocate’s help. She has lined up private caregivers who are fabulous. They LOOK for things to do to help. One of them has done laundry, filled/emptied the dishwasher, watered plants, and spent hours cleaning my parents’ fridge! And the advocate has given them lots of specific instructions as to what to look for - if they see anything of concern at all they are to contact her immediately. They will also give him rides to the doctor or other appointments.

A busy day today. I had to wait in line for over an hour today to get a handicapped placard. I got home and Dad informed me I bought the wrong walker - he needs the one with wheels. Nobody told me that - I got the only one Walgreen’s had. It’s kind of hard when I feel like I’m bending over backwards to help and Dad is grumpy. But I get it that it sucks to feel horrible so I’m just venting. :slight_smile: I DO feel bad that I’m leaving my sister to deal with everything.

Sorry to keep venting, but can’t do this with family. The Palliative care doc came by and said what is going on is Terminal Delirium; she was livid we were treated like we were by the nurse. She did say they don’t know how to deal with end of life, and she would like my dad to go home ASAP. She and hospice are trying to get all the ducks in a row for him to leave in a few hours. I wasn’t sure I could have a sitter tonight as I had asked them to start tomorrow. Is seem due to his condition, he qualifies to have an LPN stay with him until he is stable and Medicare will pay!!!

The doctor also order some morphine as he keeps trying to get out of bed and pull his cath out. He just closed his eyes for the first time today! The Palliative care doc has been wonderful, and we have had good nursing care until the last two shifts. Today’s nurse had major attitude, telling me he didn’t need meds as he was fine. The Ativan didn’t touch him, so that is why she went with the morphine. She explained to use that the drugs used in the hospital are not for comfort, and once home, they could help him more.

Hospice will use morphine to make him comfortable. Hope the transition goes well.

I do wonder about that “terminal delirium.” My mother’s delirium was so bad that the hospital hired a one on one aide to sit in the room 24/7, but it was totally from being in the hospital and she is fine physically now, back to her “normal” dementia.

She had a nasogastric tube and kept trying to pull it out, and also didn’t understand that she could not drink with it in. She kept lunging for the sink, and asked literally every 5 seconds for cold water. Without the aide she would have done something that would have killed her.

What does the palliative care doc say about the landscape ahead? If the bowel is not working due to tissue damage or death, is his tummy blowing up? Is the pain going to be hard to manage? If it is assured that this is an end of life situation, I hope there is a plan for pain management that makes for a peaceful transition.

I hope you will continue to vent. I know I did when my mom was in crisis.

@MaineLonghorn they all have rollators, the ones with wheels and a seat. I also have the lighter aluminum kind in my car because I cannot lift the rollator. There are times when the stability and relative slowness of the aluminum are helpful, like after an injury. So maybe keep it too! In our area, councils on aging/senior centers have basements full of rollators!

I bought my mother a pocket talker until the hearing aid arrives. It is a small box with a microphone and a cord with ear bud attached. Yesterday she tried to use it as a phone. Noone answered :slight_smile:

Once we get through my father’s care, I will have next deal with convincing my mother she needs a hearing aid! She would always complain my dad couldn’t hear, which wasn’t true; as I have been with her for a week straight, I have noticed how much she doesn’t hear.

Dad is home and on constant morphine and Ativan. He starts to stir and he gets more. The hernia started causing pain again Tuesday night; about the same time he became agitated. Having a nurse here has been wonderful, although the evening one was better than the afternoon one. They both are keeping him sedated and just sit and watch him while making notes. The hospice nurse comes each morning to evaluate him; she is the one that can order a change in meds for the LPN to follow. Until tomorrow we will be able to keep the LPN; at his morning evaluation, we will be told if we have to step down to a sitter.

While I hate he is totally drugged, I know he was in pain before, so this is for the best. I may have said this before, but it never crossed our mind that he would die from a hernia, not congestive heart failure or his kidney disease. As he is not eating or drinking, the blockage in the bowel shouldn’t cause other issue. While no one has a crystal ball, I do not expect we have more that a day or so. Mom and I are at the house, he has had a few visitors that stay for only a few minutes. It has been said they can hear, so people are talking to him.

A very sweet story, sorry in advance for the length- My parents have been in this apartment complex for 4 year; it is a mix of ages, from the just entering the working world to those my parents age. The same people have worked in the office and maintenance since they moved in. The head maintenance guy, Kevin, lived on site right below my parents until about a year ago… About 2 years ago, Kevin was in a horrible automobile accident; he should not have survived. He suffered a broken back, broken neck, internal injuries, 6 fractured ribs, a broken ankle, broken wrists, fractured cheekbones, a fractured chin, and he also lost multiple teeth due to facial injuries. Due to his tracheotomy and lung infection, surgery to begin to reset and repair broken bones and repair internal injuries had been delayed and he was mostly unresponsive. After a year, he was still in a wheelchair, but more recently, has been able to walk. He had to stay on disability and never returned to work. Anyway…one of the other maintenance guys was here this morning to work on the AC, so I asked how Kevin was; I lived in an apartment here for 6 months waiting for my town home to be finish. He said Kevin was doing well and left. Not 5 minutes later the doorbells rings and there is Kevin standing there! I asked if we had willed him there; he said he came to the apartment to visit my dad. He went into dad’s room, held his hand, and told dad he loved him. He just stood there with dad’s hand in his for several minutes. He gave my mother and I a very long hug. This isn’t a long time friend, just a worker at the apartments. It was such a touching moment; maybe it was a paying it forward moment from his recovery, knowing that others did the same for him. Yes, my parents donated to his Go Fund Me, but only a very small amount. I think this is what I will remember the most of this whole episode.

@snowball, what a nice story! Thanks for sharing.

I left Austin in good spirits, knowing that my parents are in good hands. The other big advantage to the advocate we hired is that she has lined up a group of private caregivers who are fabulous. Unlike the agency workers, these women LOOK for ways to help. They do laundry, dishes, cooking, decluttering, etc. The advocate keeps a close eye on them and communicates with them daily. They understand that they can use their phones only rarely. The advocate also found a better therapy/nursing agency. The RN evaluated Dad for a couple of hours while I was there. He said they are going to keep a CLOSE watch on Dad. He’s even sending out someone this weekend to check on things. They want to make sure he doesn’t crash again. These are all things that should have been done back in April, but weren’t.

I was in Austin for 15 days and devoted full time to helping my parents. And I still couldn’t do it all. So I’m thankful for help. And yes, for the fact that my parents can afford to pay for it.

I am jumping in here with a thank you for help in dealing with my mom and her dementia. I have not been on this thread often to “talk” but have read so much here that helped me. I ended up moving her close to me last summer for the last 5 months of her life. (She stayed in a memory care facility about 30 minutes from my home and I visited her daily.) Would not trade that daily time with her for anything.

I have No regrets. I gave all I had, and I signed up for counseling at the same time I was scheduling her move. Talking through past and present hurts and hard feelings made a huge difference as I pre-grieved her passing. That is the best advice I can give from the other side of where so many of you are now.

And God taught me to “be” – just be with my mom. I am a doer, and dementia patients can not DO much of anything. The simple act of pushing her wheelchair out to the covered porch to enjoy some fresh air and peaceful quiet was a treat. I remember a moment when a gentle breeze came along, and my mom lifted her face to enjoy it blowing through her hair. You can not change the dementia patient, you can just honor them by showing up.

What you are doing, caring for your loved one, is an act of sacrifice and love. It is hard stuff, very challenging for the caregiver both physically and mentally. If you are a spiritual person, lean in to that spirit. That was super helpful to me, along with friends and church family, and neighbors who brought meals, sent cards, and gave lots of hugs.

Act now in ways that will allow you to have Peace in your heart when this journey ends. No Regrets.

So touching, powercropper.

Wonderful post @powercropper, and for well-timed for some of us. I keep pushing my mother to do activities but she really prefers to sit in the sun “reading.” Yesterday I told her that I would stop being her cruise director.

I couldn’t get a hold of her today. This time, the aide told me, she was trying to answer with the tv remote :slight_smile:

She called me 12 times while I was in the city doing errands, asking me to bring her some gin. Oh boy.

No regrets indeed. That is a great goal for all of us. @powercropper I am glad you found peace in caring for your mom.

@compmom LOL cruise director. If you’re near the liquor store anyway, you mind getting /me/ some gin too? :smiley:

?? (that’s a martini glass)

On NPR’s Fresh Air yesterday:
A Clearer Map For Aging: ‘Elderhood’ Shows How Geriatricians Help Seniors Thrive
https://www.npr.org/sections/health-shots/2019/06/17/732737956/a-clearer-map-for-aging-elderhood-shows-how-geriatricians-can-help