Elderly Parents Need Help

[TerryC282085]

My father is 80 and can no longer take care of himself, in the family's opinion. He suffers greatly from COPD, can't take more than a few steps (while on oxygen) without getting out of breath. He "wants" to stay in his home, however there is no family to take care of him living close. Where do I start to figure out what options are available?

Neutral person to evaluate his health and abilities.
Finding in-home care.
Assistant care living cost estimates.

Should I contactr his insurance first?
... 

[freelsjr]

Presently my father is enduring great pain and have been enduring such for sometime now. How can I find a doctor or a medical provider that will help him. He is seeking presently a voodoo or some root worker for assistance. He's experiencing poking feeling in his eyes and gripping feeling throughout his body. Swollen feet and ulcers on the ankles. He have been strong but complaints at times, wanting to die. What can I do for him?

[JaneCares]

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@freelsjr wrote:

Presently my father is enduring great pain and have been enduring such for sometime now. How can I find a doctor or a medical provider that will help him. He is seeking presently a voodoo or some root worker for assistance. He's experiencing poking feeling in his eyes and gripping feeling throughout his body. Swollen feet and ulcers on the ankles. He have been strong but complaints at times, wanting to die. What can I do for him?

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Hey there, Freels, Jr. 

Gosh, your father sounds miserable. Has he been to a good ol' general practitioner? He could have any number of ailments. Something that would include all of those symptoms would be diabetes. But what you have tried? Is he suspicious of conventional American medicine? 

Is he (are you) from Haiti? I found this in the National Library of Medicine: 

Altern Ther Health Med. 2011 Sep-Oct;17(5):44-51.

Haitian vodou as a health care system: between magic, religion, and medicine.

Vonarx N.

Abstract

Haitian vodou has been considered an African-American religion organized around a pantheon, sanctuaries, priests, fraternities, and rituals honoring the spirits (lwa), the dead, and the ancestors. This construction of vodou, which is predominant in the literature, is based on a substantive approach to religion. It obscures the close connections between vodou and illness and does not adequately reveal how vodou is used in the daily lives of Haitians. By adopting a microsocial perspective on vodou and focusing on the knowledge and practices of vodou practitioners, the importance of vodou's therapeutic dimension becomes clear. Indeed, I am compelled to conclude that vodou is a health care system. Grounded in 16 months' research in the Haitian countryside and using a definition of health care systems identified in the medical anthropology literature, this new way of approaching vodou situates its religious and magical dimensions within its role as a health care system. This article deals with these different aspects, addressing the criteria that make vodou a health care system. In particular, I explore the practitioners who are recognized as healers and consulted as such; the sites where practitioners meet with the sick and treat them; the vodou theories on illness; and the curative, preventive, and care-giving practices based on those theories. This approach helps us to better understand how medicine, religion, and magic are linked in Haitian vodou and leads us back to debates about the construction of vodou, which are apparently well known in the scientific literature. All of this leads us to reflect on Western approaches to healing and caring.

Or perhaps you meant he's interested in alternative medicine of various types. Perhaps he doesn't have a primary care provider. What have you tried? What were his reasons for refusing?

I'm so sorry i didn't see your post until now (10 days later). Perhaps you two have found some care and he's feeling better. I certainly hope so! Please let us all know what's going on, but only if you want to. I will pray for him in the meanwhile.

Jane

[freelsjr]

Thank you for responding. We're not from Haiti but tradional from the south. 

[JaneCares]

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@freelsjr wrote:

Thank you for responding. We're not from Haiti but tradional from the south. 

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Hello again. Have you tried taking him to a doctor? Does he have a primary care provider? He sounds bad off enough that you could always take him to the emergency room, althought that entails a long wait. I work in a primary care clinic as a social worker/mental health provider, and i work with a team of folks that includes a chaplain, a continuity of care coordinator, and a patient navigator. We are forever trying to hook patients up with ongoing care so that they get the care they need. And this is a rural hospital. 

If your father is not used to seeing a doctor, he might be persuaded that its a good idea by pointing out he'll get some relief from his symptoms and begin the process of finding out what CAUSED all this misery. If you want to know where to start, you could google the biggest hospital, particularly if it is attached to a medical school, and find the patient navigator, and ask them how to get him what he needs. 

Tell us more?

Jane

[JaneCares]

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@TerryC282085 wrote:

My father is 80 and can no longer take care of himself, in the family's opinion. He suffers greatly from COPD, can't take more than a few steps (while on oxygen) without getting out of breath. He "wants" to stay in his home, however there is no family to take care of him living close. Where do I start to figure out what options are available?

Neutral person to evaluate his health and abilities.
Finding in-home care.
Assistant care living cost estimates.

Should I contactr his insurance first?
... 

---

Hi Terry,

GailL is amazing, is she not? 

I would add one thing. I used to work as a geriatric care manager, in DC, and one option our agency, a nonprofit, offered is to get a full assessment and recommendations, and then back out after that.  (Otherwise, we charged 115/hour.)  So for less than a middling car repair, you got an assessment of the options, which included home versus assisted living, and all the variations. Truly invaluable.

And i used A Place for Mom quite a lot. If placement  in Assisted Living makes sense and he agrees. 

I would also look into what the Veterans Administration offers. There might be a local advocate who can sift through the bureaucracy for you, and him. 

With COPD that bad, i hate to bring it up but, do you have a sense of his prognosis? With his lungs in such horrible shape, one bout of pneumonia... have one of you been to see his pulmonologist with him? Because, if he wants to avoid intubation, for example, and his prognosis is bad enough, home hospice might provide a lot of support. And even though the "less than 6 months" sounds really scary, in fact some folks live on hospice for 4 years or more. As long as they qualify, which is assessed every 3 months after the first six. I was a hospice social worker once, too.

I'm sorry about all of this. Your sister's situation, and her caregiver-husband. And you being pulled in. It seems as though there is a lot going on. At some point, an eldercare attorney will help with assets and taxes and how much money all of this is going to cost. 

I'd check on the prognosis first, though.

Your dad is lucky to have you and your sister in his corner.

Keep us posted if you like. We all learn from one another.

Best of luck,

Jane

[TerryC282085]

Jane, 

Thank you for the additional comments.
Yes, his condition is very poor. Thank you for your concern. I am fearful pneumonia would be more than he could take. In fact, he had a very minor surgery within the last year and he almost didn't make it home because his O2 levels were so low, even on oxygen. However, I don't believe they've ever given him an assessment of the dreaded "6-months".

Thanks again!

Terry

[JaneCares]

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@TerryC282085 wrote:

Jane, 

Thank you for the additional comments.
Yes, his condition is very poor. Thank you for your concern. I am fearful pneumonia would be more than he could take. In fact, he had a very minor surgery within the last year and he almost didn't make it home because his O2 levels were so low, even on oxygen. However, I don't believe they've ever given him an assessment of the dreaded "6-months".

Thanks again!

Terry

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Hey Terry,

The talk about the 6 months prognosis is not always initiated by the physician. You could have a private talk with his main doc, as long as your dad has given permission to that doc to talk to you about his care. I've known patients, when i was a hospice social worker, who were on hospice for 4 YEARS. But they met medicare criteria because there continued to be a slow decline, AND the hospice team continued to provide support in the home (or in whatever setting; hospice is a concept of care not a place.) I know it's a heavy thing, and 'dreaded' as you say, but the benefits of being honest and facing the inevitable with courage can be great.

all the best to you. he's lucky to have you.

jane

[GailL1]

@TerryC282085 

Before getting into the info part of it - we need info more info on his total situation.

• when you say "insurance" are you talking about Long Term Care Insurance?
• Does anybody live with him now? 
• Do you think that he needs 24/7 care no matter where it might be or could it be 4 - 8 hours a day, can he stay by himself at night.
• How close are people that he could call if he fell or had an emergency
• how is his thinking, problem solving abilities
• Who has his official POA and/or his Healthcare POA - who pays his bills, who can legally act for him - or can he still do those things?
• Is he well off financially?  Is he low income?  Does he have Assets - savings, house, property

We generally have to know more of this type of thing because the direction we might send you or recommend is vastly different depending on many of thes answers.

[TerryC282085]

Gail, 

Thank you for responding.

• Unfortunately no, he does not have LTC insurance. He has Tricare for Life. He is a retired Veteran, but he has used Tricare for Life and not the VA for his medical care.
• Yes, my aunt lives with him now, but that is only until we find another option.
• I think 4 - 8 hour care could suffice. Yes, he can take care of himself at night. Another concern is that, in addition to his breating, his balance isn't the best and there are so many trip hazards in his home. 
• I have a working full-time brother-in-law (BIL) about 1/2 mile away that could help, if available. However, he is the care-giver to my sister who is equally as bad as my father. So, my BIL could help, but he's already stretch pretty thin.
• His cognitive skills are still very good. 
• He is still is own health care advocate, however my sister is his Healthcare POA (when the time comes). I'm not sure she is the best choice with her health condition, but that another battle for a different day. I do not think he has a POA, but I will check.
• Well off - no. Low income - no. He has a military and civil service retirement. Yes, he has assets, 2 trucks, a house and savings. 
  
  I understand that "more" information is needed. I am extremely grateful that you are willing to discuss this with me. I so want to help him, but this is outside my skill level on what to do.

[GailL1]

@TerryC282085 

Thanks for the added info - helps alot in the direction.

1.  Keep in mind always the difference in health care and personal care.  A person may get a period of covered personal care during some type of healthcare recuperating period, but what you are talking about for your dad in your post is personal care - so really no help from health insurance for personal care for him especially since he is not considered eligible in finances and assets for Medicaid at this time.

2.  So you will be looking for personal care ( a personal caregiver or a personal care aid - also called in some places "Homemaker")  to help him - cooking/meal prep, cleaning, help with grooming, dressing, washing clothes - these are called Activities for Daily Living (ADL).  Sometimes this could include driving or taking and accompanying them to places - A personal care aid does not or needs not have any medical training - the person can monitor that their client does take their meds but should not dish them out.  I use to fix my Mom's meds in those little daily scheduled pill boxes and the aid would make sure she took them or let me know why she didn't.

3,  This is a good infomation site on general things you should know and consider when hiring a caregiver.  It explains the differences in going thru an agency or hiring one on your own. 

A Place for Mom Blog - The Pros and Cons of Hiring Private Caregivers

A Place for Mom's expertise is in finding a place - Assisted Living, Independent Senior Living facilities - I do not know if they have any recommended agencies or independent care aids -

This site and info provider has a lot of general info - everything from the cost of a private care aid, to what needs to be done to make sure you have covered all the basis -

CARE.com - Complete Guides to Senior Care, to Senior Home Care, to Senior Care Planning

(see the picture with all the various guides to choose from)

And a wealth of other important general info. 

Care.com does have listings of independent senior care aids in specific areas.  They have done some of the work to qualify them.  My daughter worked with them on "Nannies" for my grandkids - used one for several years then hired another based on personal recommendations from a friend.

I am gonna also throw this site out - you will have to check for eligibility but it also has some good general info too.

VA.gov - Geriatric and Extended Care - VA Homemakers and Home Health Aide Care

You can alway look to the state where your Dad resides - Dept. of Aging - to see if they provide any other general info.

4.  Doing it on your own might be cheaper but there is a lot to do to make sure everything is covered - the personal care aid, in essence, would be your Dad's employee - so everything that entails, including making sure that his home / liability / auto insurance covers them.

Care.com gives some ranges of pay but pay is more of a regional thing - anything from minimum wage to $ 10 - $ 18 an hour - depending upon whether or not you hire independently or via an agency.

5.  A Medical Emergency Alert Call system might be good for him to have and wear all the time too.

He should agree that the house needs to go through a safety check - move rugs or anything that could get in his way especially at night, make sure he is using the O2 transport method that is easiest and safer to get around with - again especially at night.

The person that has his healthcare POA should be notified if he needs emergency medical care.

Post it at the house - or where ever would be easily found if he objects to the Emergency Alert system.

Yes, he does need to go ahead and assign a financial or durable POA - the person that is assigned this capacity does not have to take it over right now but he and the person that is assigned should know where the signed and completed document is so that it can be used if the need arises in case he is incapacitated for some reason.

6.  Remember there are other options if this is too expensive or does not work - he may have to be convinced - Assisted Living Facilities.

Some people do things under the table and some people cut corners in picking  Home care - I wouldn't - too risky.

Others will have more info, I am sure -

Ask more questions - specific or general - if needed.

Good Luck - many of us have been there (in your shoes) and many of us are also getting there now.(in your Dad's shoes)  So we know it from both sides.

[TerryC282085]

Gail - Thank you again!