My mom has congestive heart failure and so some days she is fine and other days she is quite weak and frail. When she is OK she wants to live independently and was recently passed through a big evaluation to drive. When she is weak and frail, she does not drive, she should have someone with her all that time to cook and clean and take good care of her. She is eating less, losing weight and the weak times are more frequent. We are evaluating assisted living facilities and interviewing for additional help in the home, but when I called a care manager, they charged us nearly $300 to sit in the living room and tell us nothing that we didn't already know.
So, my next step is to understand hospice... I've checked on line, but I'd appreciate hearing examples from your experience about what happens if you call hospice early, when all is well, but slowly going down hill. Thank you in advance.
Your stories and experiences have been very helpful. Now I'm going to call hospice at mom's hospital... to hear what they have to say, and I'm looking forward to your advice about the right questions to ask and if this is too early or the right time.
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By the way, this is all VERY useful information, thank you so much you wonderful caring folks!!!
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I have to say, I wish I had called them sooner. Not only do they send a nurse twice a week, but she receives 3 showers a week. The nursing has been critical. The best part is that frequently monitoring allowed her meds to be adjusted to what I consider an optimal level. Her blood pressure is under control now, They had to make several changes and manage the side effects but eventually, it really helped. My biggest concern is that after the initial 3 month period is up, she won't qualify clinically anymore. I'll be able to call them back when she declines, but it would be a mixed blessing if she was well enough not to need them.
The other biggest big benefit is the coordination the provide between her doctor and the assisted living facility where she lives. Hospice seems to take her care much more seriously and will let the ALF know when their care is not up to par. It helps me out a lot, so I don't feel like I'm constantly complaining. Her facility is very good, but CNA's everywhere seem to be too easily manipulated. RN supervision is needed.
Lastly, I can call them anytime I need clarification or advice on mom's condition or changes in her condition. Being able to discuss my concerns so frequently, has really helped me help mom. Just last week I had to ask for a social worker visit. After that mom's condition was discussed at the company's weekly meeting and her CNA visits were increased.
The terminal diagnosis is required, of course, but the six month issue is not. If your doctor cooperates it will make things easier but hospice can do their evaluation without him, too. These are usually for profit companies, so they Want your business and will do everything they can to get you approved (legally).
First of all you should be commended on both your courage & your intuition! I launched a hospice company as a marketeer & subsequently became a hospice volunteer—LEARNED A LOT! It is my recollection that one qualifies for hospice if 1. it is deemed that their life expectancy is 6 months or less and/or they are 'terminal', 2. one is prepared to forego 'life saving' measures/treatment [ex: chemo, etc…], 3. they are released by their doctor to do so [THIS CAN BE TRICKY!!! Some doc's cite their 'oath', others do not want to 'lose a patient'—consult w/a social worker re: ALL OF THE ABOVE!
What I would like to share that making the patient comfortable [palliative care] is top priority and OFTEN patients live significantly longer than expected because the care is sooooooo patient-focused, experiencing significantly less discomfort & I am often told, greater quality of life. Make CERTAIN that your advanced directives are in place & you must of course discuss this w/your mother since she is lucid. PLEASE NOTE: If your mother improves greatly you can always remove her from hospice & reinstate life-saving measures and visa versa. Hope this helps—my thoughts are w/you! Fi
May you get the help you need and good for you for seeking help.
Best wishes
Sometimes the Dr. can help you with that decision, where, when and who will help. You are doing the best you can for your mom to get her the help she needs for the quality of life she has left. Best wishes.
Hospice was called in for M when her Dr. told her she could not recieve any more blood transfusions... she has had MDS for the past 9 years... they gave her a life expextancy of 4 years and she beat that by 5, so she is a fighter... but they are there for everyone, including the paid caregivers...all we have to do is call... and Hospice can be called in at most any time that there is an indication end of life is near... that may even mean months, weeks or days... depends on you and your needs... so my prayers are with you... it does make it more bearable to have such loving and understanding people helping with this stage.... sending you lots of hugs...
You’re fellow caregivers will likely respond with their personal experiences with hospice very soon.
In the meantime, here are some articles about hospice care that might help:
When is It Time to Call Hospice?
https://www.agingcare.com/110692
A Checklist for Finding the Right Hospice Program
https://www.agingcare.com/121741
Why Caregivers Shouldn’t Feel Guilty About Calling Hospice
https://www.agingcare.com/139072
--Anne-Marie, AgingCare.com