I'm devastated - page 2

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) -... Read More

  1. by   gambroRN
    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.
  2. by   renerian
    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
  3. 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 ...
  4. by   baseline
    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......
  5. by   cargal
    Or, you could look to a geriatric care manager for support. There is a website to find one in FLA,
    see www.caremanager.org .

    As I said before, please keep us posted.

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

    renerian
  8. by   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.
  9. by   renerian
    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
  10. by   renerian
    YOu could look at an inpatient hospice unit. They would meet all your needs.

    renerian
  11. by   BBFRN
    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
  12. 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.

    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.
  13. by   BBFRN
    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.

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