How do I best prepare for caring for my elderly father as he is in end-stage copd/emphysema?

My mother is 88 and has COPD. She's been living with me for 6 years and has been on oxygen 24/7 for at least 10. She slowly declined to the point where she didn't want to walk anymore. For the last 6 months she has been bedridden and on hospice. She gets better then declines. Her dementia is constant now. She can talk for over 24 hours straight nonstop. Either she repeats phrases or she talks to imaginary people. Sometimes I'm her daughter, sometimes I'm the woman who runs the program at this place. She thinks she's in an assisted living place. She wants her walker and wants to leave. She cant walk. She can't see. She can't hear. She's always constipated and wants to eat. The caregiver feeds her a lot, especially grilled cheese sandwiches and cheese quesidillias.
I wish I could tell you how long it'll last but I'm so depressed and feel hopeless myself. I have no patience anymore. As bad as she is she does not want to die. I also care for my brother with Down's syndrome. She can't remember who he is and thinks he's my son. She calls him waterboy or David (not his name). He hates it and he no longer wants to do anything for her. He has his own health issue and is starting to get alzheimer's. My priority should be to help him have the care he needs and in not able to because of her.

Dolciano,
Sorry to hear of your father's long term illness coming into end stage.
You are doing a wonderful job.
Anxiety is such a major challenge for sufferers of copd . The home surroundings must give him so much comfort & security every day & that is only possible with the gift of your presence & care.
My mother had severe. Copd for 5 yrs & got enormous relief with oral morphine. We were so afraid to give but the Dr explained it is for Symptom Relief of rapid breaths in Copd which are so distressing. Advised us not to fear increasing doses based on how breathing was so that symptoms reduced for her comfort.
When we spaced & increased the doses with nebilisers & reg food she had amazing relief in her breathing & reduction in her anixety. In fact she was able to go on trips in the car to cafes etc pre covid.
As anxiety is a big part of copd she also had some anxiety meds to take as needed but with reg oral morphine her anxiety was better than it had been in years.
In the final year in 2018 her doses of morphine were every 2 hrs daily but she was still having good releif. The Dr added in a slow release morphine patch as felt she had underlying pain. She was up & down & hard to gauge where she was on her journey.
I brought her to Pulmonary Drs office week before she died & she had always done twice a year & always trusted him & wanted see him. We had to by wheelchair taxi.
Think he thought I was crazy to go but you become so uncertain what to do & where she was on her journey.
A week later she passed away peacefully at home after saying that the Dr can do no more for her which she picked up from his manner than what he said.
She had a possible stroke & hospice started IV morphine & we kept her at home & she passed in hours peacefully with family round.
One thing meant to say was she couldnt bear & feared was showering. She said she got claustrophobia which she also had suffered from as well as long term anxiety. We would put a chair at sink & have quick wash & then did a quick wash sitting on the toilet & used a jug of warm water to clean private area as she wore pads. Occasionally persuaded to have for hair shampoo & shower. Mostly managed with this well.
We always gave morphine & food 30 mins before washs, walk or activity as dietician said the copd fast rate of breathing increases the need for calories & regular small snacks give energy before activity.
I always carried biscuits a sandwich & few prepared liquid morphine in a jar in my bag so she could take more if more activity. The half way seats in the hallway or a rollator that she could sit down on any time.
Ww had moments if mutual irritation illness & stress of the patient & exhaustion & frustration of the carer. I felt bad but let it go.
I do wish now I had put aside my caring tasks to sit quietly more.
It's not easy keeping on top of it all but you sound like you are giving & doing a lot. Get support & some relaxation for you , it takes it's toll but it a special time & know what you are giving means & helps so much

Please lean on your Hospice folks to the best of your ability. They know him and they know you and will have the best advice. There will come a point where you will question everything, from amounts of Morphine to withholding Morphine if needed. Your Dad already suffers from SOB chronically. It is a dreadful thing, and it can cause panic. The delivery of MS can sometimes increase panic because of a feeling of no control. There is no good way to make breathlessness good, and as the body begins to shut down and confusion increases it can lead to a sort of panicky chaos. Do lean on Hospice. As I said, they know this individual case. They will know when Dad's comfort level and panic will lead to a choice of what to administer; often it comes down to comfort needs leading to a risk of medicating so much that there is an increased chance of your Dad passing; however, this passing would likely be hastened on by some few hours to a day of increasing panic and discomfort. At this point discuss and follow advice of Hospice would be my advice; I hope you have really a good hospice crew because it makes such a difference. I am sorry you are facing down this loss, but how amazing. COPD often takes people long long before they attain this age. What a credit to his determination and your care.
How is your Dad doing emotionally. Has he expressed any wish to go to peace, or is he still a warrior about it all?

I'm not sure you can do ANYTHING to make your dad comfortable or satisfied at this stage of the game. Shortness of breath is a terrible feeling..........panicky is a better word to describe it. When you can't catch your breath or breathe deeply enough, you wind up paying attention to every breath that's taken instead of it being an automatic function that's taken for granted. Years ago I had very bad chronic asthma & couldn't get thru the night w/o 3 or 4 nebulizer treatments, so that's how I know what it feels like b/c emphysema is the same as asthma, except it doesn't clear up.

Don't be afraid to give your dad the morphine as he needs it because it also helps to ease his breathing. Hospice will provide you with all the items he needs; ie: adult briefs, a hospital bed if needed, equipment, etc. You shouldn't need to purchase anything; I didn't have to when my father was on hospice in 2015. The CNA would come in to give him a shower or a sponge bath as well.

What you're going through is very difficult to witness and to cope with, I know. When things got very bad with my father as he was nearing the end, I actually took the family out of his room & we went out to a restaurant to eat. To sit there and watch someone struggle to breathe is just too much after a while and my nerves were frayed. The hospice nurse told me she felt that dad was 'hanging on to life' for OUR sake.........that it would be better if we left. So we did. It recharged our batteries a bit so we could sit vigil once again. He passed away at 2 am the next morning. He was on hospice for only 19 days, and for that I was very grateful.

Please remember to look after YOURSELF during this time your dad is under hospice care. The stress of the whole thing is a lot.........so make sure to take some time for YOU to unwind and just relax. If that means hiring some in-home help for a few hours a day, do it.

Sending you a big hug and a prayer that your father's journey ends peacefully, quickly, and with the least amount of pain & suffering humanly possible. Wishing you strength as you endure one of the hardest things a daughter will ever have to endure.

Notes I made while working with a client with late stage pulmonary fibrosis:

Encourage use of a commode. It saves any need to hurry to the bathroom. Plus, there are wheeled versions which can double up as indoor wheelchairs/movable toilet seats.

If he's very short of breath, be quiet unless you really need to say something. Hearing - let alone listening - takes energy, and the person has none to spare.

Be calm yourself.

If the person is having a rough episode of shortness of breath, encourage a high seated position with a good posture - you can look breathing techniques up online (choose your sources carefully, e.g. the American Lung Foundation at https://www.lung.org) which will show you what to aim for. Don't try to rehearse any technique during an episode, though, keep to very brief prompts and lead by example. Give it time.

Ensure there are plenty of stop-off points on any route the person uses frequently - perching stools or high upright chairs with arms where he can pause and rest.

Think through carefully how the person must feel when he can't "catch" his breath. It's not only uncomfortable, it's frightening and claustrophobic. Try your best to overlook any lapses in manners or attitude without comment, but if you - as a hard-pressed and worried family member - do snap back then forgive yourself too.

My client wasn't able to shower - steam + sustained effort were too much - but he was usually (3 mornings out of 4) able to make it as far as the bathroom to wash and clean his teeth. Break each task down into short, easy stages; and make it acceptable for the person to abandon the process and get back to bed/armchair if he's struggling. Take a bowl of water, washing things, and his toothbrush to him so that he doesn't feel a failure, and help him do as much as he feels up to. Or come back to it later! There are no rules :)

How often are the aides coming in?

I’m so sorry you are going through this. My dad died back in February from kidney failure. At the end he needed me for everything. And boy did we have our differences. I found it easier to just start every day fresh. I know that it’s easier said than done. Especially not knowing what the future holds. And it’s different with every person. I wish now I would of not worried about the small stuff and just enjoyed my dad. My dad sort of had the upper hand with his kidney failure. He could sort of decide when he had enough and when he did we stopped dialysis and hospice was brought in. We had one more close conversation where he was with it. And that was the best gift he could of given me. I hope you can have that with your dad. And I hope you can be strong for him. And I know it’s so hard. I depended a lot on the people here to vent. And if you read my profile you can see these group of people are so kind and thoughtful. So please keep yourself safe and rested. I will have you in my thoughts. Debbie

Sorry you are dealing with this.

Good to know from posts here that hospice will cover his needs.

I'm sure it is very difficult to care for someone at this stage of life. It would be nice to be appreciated but he is probably at a place where he just can't really even think of that. I guess all you can do it do your best to ignore any negativity and/or complaining. I should take my own advice since my mom's negativity and complaining do certainly get on my nerves! It's frustrating to do what you can and never/rarely get a pat on the back. Oh well, it is what it is, right?

He's lucky to have you and you should feel good about what you are able to do for him. Just please try to take care of yourself too. Easier said than done but necessary.

Re shower - I wouldn't worry about it and take the advice of getting him sponge baths. Dry shampoo.

Best of luck.

My husband was under hospice care in our home for the last 22 months of his life. He was on 4 liters of oxygen the whole time, until the last week or so. Your father might be afraid of falling in the shower at this point, so perhaps see if he will let the aides give him a sponge bath in his hospital bed. My husband was bedridden, so the aide's came twice a week to bath him in his bed. And as far a diapers are concerned, if and when they are needed, hospice will provide them for you, along with bed pads and such. While he's under their care, they should be proving anything he needs, including any medications and his oxygen, at no charge to you or him, as Medicare covers hospice care 100%.

Everyone's end of life journey is different, and only God knows the day and time that He will call your father home, so I would just say to you, enjoy whatever time you have left with him, make sure you're taking time for yourself regularly, and quit beating yourself up over your frustrations. All caregivers get frustrated at some point in their journey. You're only human, and you are doing the very best you can. That's all any of us can do. Wishing you peace for the journey.