My (almost) 98 year old father has lived with my husband and me for the past 4 years - we have now called in Hospice to assist with his failing health. He has been on oxygen 24/7 for over a year, uses a walker, he can walk from his bedroom to our kitchen/FR with his portable oxygen but it leaves him breathless. He still eats small helpings of 3 meals per day but complains about not being able to “get his breath” 3-4 times per day (I think he means those “deep” breaths). Hospice has given us liquid morphine with directions to give him 5 mg doses as needed (no more than 2 hrs apart -when he complains about his breath). He is on many other meds for his condition too. We have a bed that adjusts positions for his condition to make it easier for him to breathe at night. He has difficulty showering, but refuses to allow me or any hospice aides to help him...so he avoids showering. I would appreciate any advice from those who have been through the “end-stages” with a parent about how to prepare for what is down the road, like the little things that lie ahead........i.e, should I purchase adult diapers to be prepared for if/when he will need them? My most difficult task is finding the patience and tolerance to deal with his neediness - I can do the practical work, but get frustrated when my efforts don’t seem to make him comfortable or satisfied. It might help if I knew how much longer the situation will last, but of course, nobody can tell me that. Please share your story about how you dealt with the end of your caretaking experience with a loved one - as I have learned, you don’t know what it’s like unless you have been through it. Thanks.
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.
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
How is your Dad doing emotionally. Has he expressed any wish to go to peace, or is he still a warrior about it all?
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.
So sorry for the loss of your Dad. Thanks for your kind words. Since my husband is (now) working from home, I am able to take a walk and run errands but with COVID, we avoid eating out at restaurants and socializing so there really is no where to go even though I long for a vacation. Sometimes I do go sit in my bedroom just to have some time to myself and escape.
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?
Yes - we, too, have our differences about many things and it does add to the frustration of taking care of him. I'm glad you could have "that" conversation with your Dad. This forum has been a big help to me over the past few years - just knowing that others have bigger issues or are going thru the same pangs helps. Thanks for your concern.
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.
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.
I hope you have found peace in your life since losing your husband - it sounds like you did a good job taking care of him in his last years.