I'm devastated

Nurses General Nursing

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I need some advice - hope some of you have been there and can help! I'll try to keep this as compact as possible. I am my Dad's Health Care Proxy. He is 84 year ols. He has Parkinsons (advanced) - very symptomatic. Confused and disoriented at times. After taking a close look at his labs, found he had an elevated BUN and creatinine. Took him to a nephrologist and had renal ultrasound done - showed hydronephrosis. Took him to a urologist for bladder ultrasound, bladder was full. MD gave him the option of a suprapubic catheter placement or letting nature take its course. So - if he has the catheter placed - he cannot stay at the assisted living facility due to restrictions involving assisted living residences. But if I decide not to have the catheter placed - he will further compromise his kidney function - possibly putting him in a position of having to be dialzyed. Dad currently resides in an assisted living facility (that I am very happy with - after signing him out of a nursing home AMA) OR - I can elect not to do anything and let nature take its course. I know my Dad would not want to be kept alive mechanically, vented (etc), but this - I don't know. The urologist told me that he has a dual problem - BPH and rigidity caused by the Parkinsons on his sphincter muscle. It's tough having to make these kind of decisions for a loved one - I have been very depressed over this - would appreciate hearing from anyone that has been in a similar situation. Thanks so much. God Bless.

I support the two of you in whatever decision you chose to make. However, I have one question. Would not medicare pay for admission to facility with higher level of care in case of a superpubic cath?

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Originally posted by kids-r-fun

This is really bugging me so I have to ask...why can't he stay in the assisted living if he has a SP cath?

i assumed it was more of an adult home type setting and that it would score him too high....

but perhaps i should not assume...:imbar

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Hi GambroRN,

I believe Florida has laws that protect your Dad. The laws were designed to help people like your father and are called "aging in place" laws. Your Dad should be able to stay right where he is now. Many ALF's have different licenses that allow them to provide different levels of care. Some can not provide the care to the catheter but the person can stay in the ALF if they can care for the cath themselves. A HHC nurse can come in and do the initial teaching. You could care for it too. As long as they don't have to do it, he can stay. The other levels of ALF licensure allow for more technical care to be provided through the ALF. I think the ALF he is in either wants to get rid of him or is misinformed about how to handle this situation. Find out what kind of license they have. Last resort may be to hire a private duty nurse that can help him with his catheter. As long as the ALF is not providing the care, he can stay! If they have an extended care ALF license they can provide the care. Perhaps a move to another ALF that has the resources and licensure is another option you could consider.

MCA will pay for up to 90 days in a sub acute facility for rehab and/or stabilization but that is it. Private insurance will also pay for sub acute care but usually authorizes less time in the sub acute. IMO, if the only thing he needs is cath care then he doesn't belong in sub acute either except for a short period after the procedure. LTC is an option but is very expensive as you already know. Wishing you and your Dad success in finding the right solution to the problem.

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Hi,,, gambroRN,,,,,

As DON of a fully licensed Assisted Living Facility in Florida,,,, I have to agree with what flowerchild says,,,,,

The laws in Florida,,, have changed,,, so residents can 'age in place',,,, Having a HHA,,, come in to do cath,, teaching,,, care,, is acceptable,,, you as well could help take care of it,,,, He can do all he is able,,,, and with our ECC licensure,,, we can take care of it,,,,

Hope this helps,,, would be much better than facing dialysis,,,,,

I don't know where you reside,,, but if I can be of any help,, please pm me,,,,,,,

~~kitamoon

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Specializes in MS Home Health.

CAn't they just bump him up to another level in the AL to keep him there? The aides could empty the cath with proper education. I have seen alot of people with caths in the AL.

Let us know what you decide.

renerian/susan

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I don't know about Fla and would go with what Flower Child and Nakita stated; here in Pa I had residents with foley catheters that home health came in and changed monthly. Can they use a foley cath and coude catheter for a while and see how that works out?

I'm glad you came to the board-the support here is priceless. Let us know how things are going.

Blessings,

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Thanks to all for y our opinions - let me try to clarify the situation.

My Dad is not at all able to take care of the cath himself and as far as the ALF is concerned, they are not "licensed" to do catheter care (I will talk to the director about the options y ou folks brought up tho). But, his MD talked to me regarding his Parkinsons and told me that by placing a catheter we would just be prolonging the inevitable - it would in essence relieve the hydronephrosis, but due to the muscle rigidity of Parkinsons there would be another hurdle to address in the not to distant future.

We also discussed quality of life issues. Right now, my Dad just pretty much sleeps all day (or tries to), and drools constantly.

Parkinsons is such a terrible illness....I can't even put into words what it feels like having to witness this unbelievable decline every day. I just want to cry.

THis is a tough decision - but can't tell you all how much I appreciate your input - and just being there to listen.....Thanks and God bless all of you.

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Specializes in MS Home Health.

Wow I feel so badly for you. That has got to be tough. Maybe looking at a SNF near your home would be an option. Sounds like your getting backed in a corner with him being so unable to care for himself. I am sorry your having to deal with all this. I know your heart if probably breaking......

Hugs,

renerian

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Discuss this with your father. If he no longer can accomplish his wishes through his body and no longer wants to try to stay on this planet, and wants to go home to the Lord, talk to his doctor about putting him on hospice and letting him stay where he is with a 24/7 private caregiver.

It doesn't sound like it would be for a long time.

We've got a Parkinson's pt in an ICF who is about to face this same decision ...

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I feel for your position. This is so difficult. I was in a similar situation with my Dad. He had always made the decisions for the family. I was the baby of the family....so difficult. You have all my heartfelt support.

Do you know any hospital based case managers or social workers? The case managers at my hospital in Fla. do this sort of assistance everyday. Maybe they can be enlightening......

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Or, you could look to a geriatric care manager for support. There is a website to find one in FLA,

see http://www.caremanager.org .

As I said before, please keep us posted.

Blessings,

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Specializes in MS Home Health.

If you put him in a SNF/with hospice you would not need to pay for an aide 24/7 as the facility meets that criteria.

renerian

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