I'm devastated

[gambroRN]

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.

[renerian, BSN, RN]

That is a great idea. I know in my fathers and mothers case it was cost prohibitive at 50 to 100 per hour.....

renerian

[Cascadians]

What we have found with hospice pts even in ICFs/SNFs is that staffing is too short to provide adequate 1:1 care for the dying. We see the best results in ALFs or ICF/SNF with a family-hired private caregiver following RN instructions.

Yes, it does cost money, but using a private caregiver is much less expensive than going Agency, and after all it IS the end of the pt's life. Worth it.

A MSW or case manager will probably know of several good private caregivers.

For 30 years we have run our own tiny 24/7 biz, and the care we as 2 caregivers per 1 pt in hospice homecare are able to provide is far superior than the 1 aide in SNF per 15 pts (with 1 RN per 30 pts) who simply does not have time. We also work as a team in an ALF/SNF setting with approximately 11 pts on our wing, and there is no way even then we can provide good enough care for the dying, ie gentle turns/cleaning q2h, mouth care, suctioning, medication monitoring, anxiety monitoring, comforting presence, etc.

Working in a hospital with 24 acute pts per wing is even dicier logistically. It was hard to watch so many dying pts (oncology) without being able to adequately care for them. Just not enough time and too many other pt needs simultaneous demanding.

Anybody who has done 24/7 for a variety of dying pts knows how much work is involved and how exhausting it can be. In our ALF/SNF we usually have several pts dying, since they don't come there until their health is in quite dramatic decline.

[renerian, BSN, RN]

We tried to find but could not afford 24/7 care. Agency was between 800 to 1500 per week, insurance did not cover plus the manager fee which insurance did not cover, plus his meds were 800 per month. WE had to do it alone. 1 to 1 is nice but most people cannot afford it.

renerian

[renerian, BSN, RN]

YOu could look at an inpatient hospice unit. They would meet all your needs.

renerian

[BBFRN, BSN, PhD]

Originally posted by Cascadians

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 ...

I agree with Cascadians...I went through this with my grandfather earlier this year, and in addition to the Parkinson's and renal failure, he developed other problems. In the end, after a 6 week hospital stay, in his moments of clarity he just kept saying he wanted to go home. We took him home with hospice who helped us take care of him in his final days. He was very week, but he smiled the minute we put him in his own bed. I thank God for hospice, and I highly recommend it for anyone in this situation. Remember that your father may have already come to terms with the fact that he may never get better, and do whatever you think he would want you to do to preserve his dignity and quality of life. You've known him all your life, and deep down, you know what he would want if he can't clearly convey it to you- he raised you with his own values. God bless you, and don't feel guilty for the decisions you have to make.:kiss

[Cascadians]

24/7 is considered custodial care and is not covered by normal insurance, very tragic. The government is not likely to ever change this as it would totally drain public funds.

End-of-life-care is labor-intensive. Very difficult and draining.

The Parkinson's pt we have now was recently moved from home --> continuing care community private apartment; 6 days later to ICF/SNF for falls. He has stopped eating and drinking. A friend of his visited and told us that several months ago, he had said that when his disease became too much for him and his family to handle, he would stop eating and drinking. The pt and family are concerned about money, but having just sold their home, they do have money for end-of-life care.

The latest we heard last night was that his family didn't know what to do and he was about to be admitted to the hospital. We are praying his family gets good counseling and repects their father's wishes. This man is an amazing multi-talented person who accomplished great things in his life and held very high positions of public responsibility. His dignity must be respected.

There is usally a MSW or discharge planner RN at facilities / hospitals who does not charge for counseling, coordinating and advice, and arranging care at various levels. Always a good idea to receive their services and get all the help possible.

This is a very sensitive time of life for all involved and it is very important to listen to and communicate lovingly with the patient. Even demented patients have a sense of what is happening to them and whether or not they want to stay on the planet or go Home.

[BBFRN, BSN, PhD]

Originally posted by Cascadians

24/7 is considered custodial care and is not covered by normal insurance, very tragic. The government is not likely to ever change this as it would totally drain public funds.

End-of-life-care is labor-intensive. Very difficult and draining.

Yes, we were very lucky to have a large family, and we all took turns staying with my grandfather and taking care of him (he lived in a retirement community). Plus, he was a veteran- which helped immensely with the cost. His Hospice ended up being totally free of charge, thanks to the VA.

[Cascadians]

lgflamini, it sounds like your family was able to provide the very best situation: Aging in place in familiar surroundings with hospice present and family members providing the intense 24/7 care.

Hospice funding varies but usually seniors get this service at no cost. Some Hospice programs pick up the medications and DME costs too, along with RN home visits, bath aides, pastoral, MSW, and 4 hrs/week volunteer respite visits, and some other services available. But homecare hospice is not funded to provide actual custodial care or 24/7. And the hospice programs we work with have changed some of the meds they're able to cover.

Best to sit down with an experienced RN MSW where you live who is familiar with all the programs available and all the regulations for your state.

Best wishes with a very difficult time and decision.

A well-prepared well-cared natural death after a life well-lived is an amazing and beautiful spiritual experience.

[jnette, ASN, EMT-I]

Gambro..

I am so sorry to hear of your dilemma. This is sooooo hard, and many of us will have face these decisions sooner or later. Have you been able to discuss and explain the options to your father? This would certainly be the place to start... find out what HIS wishes are, after thoroughly explaining each one, and what is involved.

You and I know all too well what all is involved with the dialysis choice... and while I feel it is a blessing for those who are younger, and otherwise not badly compromised, the really elderly do not fare so well, and not nearly as long.

There will be the surgery for placing the graft or fistula.. perhaps initially a subclavian cath..all traumatic at his age. Then will he be able to sit stlll for 3-4 hrs. 3 x a week with the Parkinsons..? The food and fluid restrictions... what time he DOES have, even his enjoyment of certain foods and certainly drink would be severely limited if he went on dialysis...so much to consider....how to maintain quality of life in what time he has left to him.

I hope the others have given you new avenues to persue... I can't help you there... the good folks here know so much more than I regarding these matters. I may need their advice someday for my own mom, who is eighty.

But I do offer you my support... in whatever the two of you decide. I wish you well. I wish you courage and strength and wisdom. I wish you health of body and mind, and peace of spirit.

I wish your father the BEST of everything. :kiss