End stage dementia - discharge from rehab to home for hospice care

HeyDforDaughter

Hello all, Only child here. Reporting that mother who had a stroke and who has end stage dementia is being discharged from rehab to home for hospice care.

Prior to her stroke, I  and my husband had been taking care of her at home. Placing her in a long term facility crossed my mind at times. I had thought maybe she would get better round the clock care and socialization. 

But after seeing (and never being able to un-see) what I saw and experienced at this particular facility that is short-handed, and also has short term and long term patients, I couldn't leave my mother there. I was bedside with her 10-12 hours a day during her 3 week stay. And I even had to hire out of pocket night sitters (through an agency) to make sure my mother didn't slip out of bed again (and her room was across from the nurses station). The CNA's were from a registry on a daily basis and it was a crap shoot whether you got one who was nice and knowledgeable and didn't have at least 10 patients to care for. My mom needs 100 percent care. And I guarantee she would not have gotten such care had I not been there to assist.

Now she comes home to hospice care. I still have to figure out finances to hire sitters to give me a break once in a while. I'm straddling her daily care needs while preparing my mind, heart and spirit for the inevitable plus watch her slip away both physically and mentally and then try to factor in self-care

When people say this journey is hard, I don't believe you really know how hard unless you've lived it. Salute to all who have lived and are living the journey. 

I have it heard said that God only gives you what He thinks you can handle. I'm just wondering whether He has me mixed with someone else.  I am praying for strength, please pray with me. Thank you.

eaglemom

It sounds as though you have your mom's plan of care in place. You are correct, this is a difficult journey to watch. I too an an only child. I chose to flip my thinking around - instead of thinking I'm an only I have to make all these decisions, etc I chose to think I get to honor my parents by making these decisions. I didn't have to ask anyone else or argue over anything - I could focus on their care and support. Now I realize its only a different mindset, but it truly helped me.

We are here to help and encourage you. Yes you do need time away for a deep breath.

eagle

LicketyGlitz

Have you already connected with the hospice folks? My dad's hospice wasn't so great (but he also died within 24 hours of coming home). But my mom's hospice was fantastic and had resources like weekly respite care, wonderful home bath aides and nurses, always available by phone when we were stressed, chaplin services too. Check with your hospice to see how they can make the end of the end-of-life journey not only easier for your mom, but for everyone in your household.

Also, you can choose a different hospice, still covered by medicare, if the one the long term facility hooked you up with is not able to offer much beyond basic care. Something I did not know with my dad, but learned later when it was Mom's turn to head on out for her next adventure!

Good luck, good memories to help you all through this time, and peace in whatever form you need it.

May flowers

HeyD,

Sorry you are going through this as well. I can relate very much. We took care of my FIL, then he lived 9 months at MC, fell and broke his hip, came home for rehab in Jan, and still here, but on hospice (stage 7 c or d)

Like you, the alternative to keeping him here is unthinkable. We already had heard the nursing facilities around us were poorly run and understaffed, but the hospice nurse and CNA that come here have confirmed that they are bad, in fact much worse than we thought. They have had patients go in for respite and come out dehydrated and with bedsores in one week, some sent to the hospital, and didn’t survive. MCs will take him, but with a 24/7 caregiver. 

As hard as it is, we know this is the right choice for him to let him finish his days here. After much trial and error, we have some good daytime caregivers and so far it is very manageable. I have found that even a few days a week helps tremendously. It helps a lot that DH and I are a team on this. Hospice has been a wonderful resource as well, especially our nurse/case manager.

As far as God not giving us more than we can handle, my take is more that he will see us through whatever comes our way. I could not do any of this without that faith. Prayers up for you

toolbeltexpert

Hayd I am praying for ya. 

Stewart

Joydean

HeyD, I truly believe as MayFlower, God will bring us through. You are not just an only child, you are a special child caring for her mom. Prayers for you and your mom. Prayers for strength and peace, also for a very special hospice group. Be kind to yourself!

HeyDforDaughter

Thank you to all of you for your responses and support. My mom came home today. Hospital bed and equipment are in. Hospice Admissions nurse visited. Case Manager to come tomorrow. But to get to this point I had to speak to at least 5 layers of people including Hospice rep, Intake Nurse, Equipment provider, Equipment scheduler (twice) and Equipment deliver-er over the course of a couple of days. The hospice service does offer more than the basics so that is encouraging. I just  need to be able to sit down and exhale and look through all the material so that when the Case Manager comes tomorrow, I can ask questions. Also, tonight I can see for myself, how much care (and sleep meds) my mom needs at night and hope to be able to estimate the amount of time I need for outside help. Based on your kind words, I am looking at the blessings part of this journey. Right now, it's a blessing that she is without pain and not acting angry or hostile. There are still spurts of Mom that come through that I can still experience and enjoy. Thank you again. I believe I feel the strength of your prayers. I pray for all of you as well.

joseph58

I tried at home care for over 30 days only to see things get worse day by day for my father.

As it turned out he had to go back in the hospital 3 weeks ago. due to his age (90) he has an untreatable condition in addition to the dementia.

The hospital wants a discharge plan. Called and spoke to a dozen different people, including VA reps since he is a retired veteran. Unless he was 70% disabled, no dice. So, private pay for Hospice care was quoted to me at $14,500/month, which is out of the question for us. 

Trying to get him into a hospice which pays 30 days via Medicare. Not even going the Medicaid route. 

This is terrible. In addition to the grief, you get saddled with outrageous bills while trying to maintain your sanity and live your own life. 

Yes, prayers to you. 

JJAz

I too found the activity during the first week of hospice to be overwhelming.  After the first week, we all settled in.  Apparently this is quite common.