Good resources for practical info re: caring for a terminally ill elderly parent?

cheeser

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My father's condition has suddenly deteriorated to the point where he's bedridden and unable to take care of his most basic needs, and it feels like we're always scrambling to come up with solutions to problems we hadn't really thought of before until they happen -- which is usually in the middle of the night when options are limited.

So rather than keep reacting to problems as they arise (such as nose scabs from high flow oxygen therapy, constipation, trying to prevent bedsores, etc.), can anyone recommend some helpful tips and/or good resources so we can be better prepared? :)

Thanks much!
 

CatLover49

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My father's condition has suddenly deteriorated to the point where he's bedridden and unable to take care of his most basic needs, and it feels like we're always scrambling to come up with solutions to problems we hadn't really thought of before until they happen -- which is usually in the middle of the night when options are limited.

So rather than keep reacting to problems as they arise (such as nose scabs from high flow oxygen therapy, constipation, trying to prevent bedsores, etc.), can anyone recommend some helpful tips and/or good resources so we can be better prepared? :)

Thanks much!
May I ask how old is you father???And what type health problems and issues does he have??
 
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cheeser

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May I ask how old is you father???And what type health problems and issues does he have??
Dad is nearly 90, and the pulmonary fibrosis has reached the point where the doctors can't do anything more for him. Well, except for recommend hospice care, which Dad has refused. That's partly cultural, so I understand that. But since we've never taken care of a terminally ill person before, we're having to learn as we go along, which isn't the best way to learn. :)

We've gotten the hang of the medical side of his care, e.g., medications, treatments, taking care of equipment and supplies, etc. It's the practical day-to-day activities of daily living that keep catching us by surprise and unprepared. So it would be helpful to have some idea as to what to expect, what sorts of supplies might be helpful to keep on hand, and that kind of thing.
 

susanm9006

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Have you checked into home hospice care? That would at least give you some relief and support with the medical stuff while allowing him to be in his own home until he passes.
 
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cheeser

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Have you checked into home hospice care? That would at least give you some relief and support with the medical stuff while allowing him to be in his own home until he passes.
Dad's lung and heart doctors have both recommended hospice care. To put it mildly, Dad just isn't amenable to the idea at this time.

But I think I'm going to contact his doctors in the morning and get the orders written up and whatever paperwork needs to be done should Dad change his mind. We've learned the hard way that sometimes several weeks can elapse from the time one of his doctors orders something, and it actually happens. So we might as well at least get the ball rolling, just in case.
 

susanm9006

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If you can have them come in to your home you might be able to sugar coat it a bit with your father. Just nurses to check on him, not calling them hospice nurses. I know you may not want to not tell him a lie but the goal is to make him as comfortable as possible which may extend beyond your ability to do it. And even if he doesn’t want them caring for him a hospice nurse could still come to your home just to work with you and make sure you have the information and things you need to care for him.
 
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cheeser

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If you can have them come in to your home you might be able to sugar coat it a bit with your father. Just nurses to check on him, not calling them hospice nurses. I know you may not want to not tell him a lie but the goal is to make him as comfortable as possible which may extend beyond your ability to do it. And even if he doesn’t want them caring for him a hospice nurse could still come to your home just to work with you and make sure you have the information and things you need to care for him.
The problem isn't that Dad is adverse to the idea of hospice care in general. He just doesn't want anyone but family taking care of him, and we don't have any nurses in the family -- hospice care or otherwise. :wink:
 

susanm9006

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My mother is also 90 and in poor health so I do understand. But I also know that sometimes I just need to be insistent about what I need to properly care for her. Even if your father didn’t no you had a hospice nurse in the house their presence would still help you.
 
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cheeser

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susanm9006 susanm9006 is right. The hospice nurse can help you as much as him. Just tell him you're getting a nurse to come in from time to time to help you. You don't have to tell him it's a hospice nurse.
Several of my neighbors have had home hospice care, and I know it was a huge help to them and their families. But Dad is adamant that he doesn't want that. So for now, we'll do the best we can, and take care of any paperwork or whatever needs to be done so we can have everything already lined up and ready to go re: hospice care should circumstances change.

We're managing okay for the moment, all things considered. And my son has offered to come over and help as soon as he gets some loose ends tied up at work.

It's the practical things that keep catching us off guard, and we're always embarrassed that we didn't think about them sooner to try to make Dad's life a little easier and more comfortable. So I spend a lot of time online trying to figure things out, like what kind of nose, skin, or lip moisturizers can we apply if we can't use petroleum products, which type of cushion do we think might work best for Dad to try to prevent bed sores, what can we do to try to alleviate Dad's anxiety during panic attacks since the doctors said anti-anxiety meds are contraindicated...those sorts of things. Thank goodness for the internet and Amazon.com! :)
 
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cheeser

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My mother is also 90 and in poor health so I do understand. But I also know that sometimes I just need to be insistent about what I need to properly care for her. Even if your father didn’t no you had a hospice nurse in the house their presence would still help you.
Bless your heart. Sorry to hear about your mom. *hugs you*

The doctors don't think Dad has much time left, so we're trying to be as accommodating as possible for as long as possible. But, of course, we realize that the time may come when we may need to rethink that.

For now, I guess I better get busy trying to find another bedside commode. The one we have now isn't working out too well. :)
 

artiemom

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I am not certain you can get hospice care , if you father is adamantly against it.

I know what you are going through.

I did my best for my dad, until I could not do anymore. I had to put my foot down, stating that it was too MY ask sake, that I needed help.

My dad finally agreed to homecare. The nurse was very good, increasing the hours he required.

When things got so sect, that hospice was the only option, my dad approved it. But he went downhill very fast.

I commend you and your family for honoryyiur dad’s wishes. But it is at a point where he needs professional help and advice—- comfort care.

Does you dad have a power of attorney set up? Now may be the time to use it.

I know you do not want to upset him, but...
You need help making him comfortable.

Try getting some homecare. This is better than nothing.

((( Hugs))))
 
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cheeser

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I am not certain you can get hospice care , if you father is adamantly against it.

I know what you are going through.

I did my best for my dad, until I could not do anymore. I had to put my foot down, stating that it was too MY ask sake, that I needed help.

My dad finally agreed to homecare. The nurse was very good, increasing the hours he required.

When things got so sect, that hospice was the only option, my dad approved it. But he went downhill very fast.

I commend you and your family for honoryyiur dad’s wishes. But it is at a point where he needs professional help and advice—- comfort care.

Does you dad have a power of attorney set up? Now may be the time to use it.

I know you do not want to upset him, but...
You need help making him comfortable.

Try getting some homecare. This is better than nothing.

((( Hugs))))
Thanks much, hon. It's always helpful to hear from someone who's been there. :hearthrob: :redheartpump: :hearthrob:

My mom is a bit younger than my dad, and still in pretty decent health, aside from some mobility issues. So as Dad's spouse, she's able to take care of some legal type issues that I can't as "just" a daughter. But there's a limit to what Mom can authorize, and Dad isn't yet at a point where he's ready to set up a POA, sign a DNR, and that sort of thing. I think he's still kinda stuck on the denial phase of the five stages of grief. He knew from the start that his prognosis was grim, but at the time, the doctors thought he might still have another 2-5 years of life left. He has only recently been told that it's now just a matter of weeks. So I think he's still trying to come to terms with that, and some days he's a basket case mentally, and the least little thing that's out of the ordinary can really upset him. That's why, at least for now, we're trying so hard to abide by his wishes, and keep our daily routine as normal as possible, and indulge in his every whim whenever possible.

Today Dad's whim is one of his favorite Bundt cakes, so there's already another family member here to help out with Dad while I get to work. :)
 

susanm9006

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It is sometimes amazing how in denial people can be sometimes. Two years ago my mom was in heart failure, her kidneys had completely stopped working and she needed oxygen to breath. Even though in intensive care for a couple weeks she refused to discuss anything related to powers of attorney, advance directives or post hospitalization nursing care. Can be really exhausting for family members
 
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cheeser

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It is sometimes amazing how in denial people can be sometimes. Two years ago my mom was in heart failure, her kidneys had completely stopped working and she needed oxygen to breath. Even though in intensive care for a couple weeks she refused to discuss anything related to powers of attorney, advance directives or post hospitalization nursing care. Can be really exhausting for family members
I know it's hard for a lot of people to think about their own mortality. It's like if they don't think about it, it can't happen. If only that kind of magical thinking worked, I'd stop thinking about a lot of things if it would keep them from happening. :wink:
 

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Have you checked with the pulmonologist's office, local hospitals, health insurance, social services, and/or Board of Health about support groups for family members of the terminally ill? Some may be geared towards the practical side of home care.
 

lorie d.

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Also is your dad a religious person? If so, maybe his clergy person can help comfort him and help him be able to accept the help he needs. It's possible your dad is terrified of death and not really accepting what is happening to him. I can only imagine how horrible it must be for a person when a doctor tells them they only have a few weeks left to live.
 
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