Hospice provided me with 5 days of respite care for my Mom. The facility is incredibly nice (nicer than any rehab or nursing home she's ever been in) and people rave about the staff. Unfortunately, my mom has been crying everyday since she's been there and says "nobody is nice to her". She says she wants to go home and doesn't understand why she's there. I've tried to explain to her that she's only there for a few days and then I will take her back home. I desperately need this time to get my life (relatively) back on track...work, relationships, a recent move, my mental health, etc. Today, she told me she is dying and wants to be taken home. I don't know what to do for her and I feel terrible since I'm the one who put her in respite. Has anyone else experienced this? If so, did your loved one decline or pass after their stay in respite? I'm terrified that this decision will cause her to give up as she's been fighting to hold on for months now. Any words of wisdom would be appreciated.
Best believe, I would take mom home.
Sounds to me your mom is precious. If you only need "a few days" surely someone would stay with mom.
I told him that I was NOT going to say "it's ok to let go," NO, but "dad, if you have to go I understand," and he seemed to really appreciate that. And he told me God had told him he was going to be a great teacher in the next life so why he put himself through so much in this one. Things with no context here but mean a lot to me. He asked for a mirror and shaved himself with my help on the last day, and looked in the mirror and said "I still got it" and he was radiant. I bought him his scones, and supplements, and soda, and last ice cream bar and he didn't want two.
With 60 mg of liquid morphine the morning before his passing he kept asking for more for intestinal pain that morning. -- I should have known but told myself he was just getting habituated (he was 90 lbs with 13.4 BMI so the nurse had told me his b/p was going to get so low that his kidneys would stop and the catheter bag would be less and less, those signs and the minor dry rasping breathing the week of) -- He stayed up and waited for me to get home in the late evening with the said scones, ice cream and soda (he ate the last couple meals I cooked for him with relish even though I knew he was full) and on 10-18-2020 the next morning he passed.
I wish he died in my arms. Do take care of yourself first but try to find a system and a routine you both can agree on so you can read to her, keep her company and hug her like I didn't my dad. Watch out for when she rallies and know that is like the two days you should really have as your mission to spend as much time as you can and resolve anything with mom. My dad's passing was sweet and a gift, the rally I get now. All the best. Mike
(I had originally used up all 4,000 words and then accidentally closed the browser, but there is so much, soo much more in this year when the whole labor of dying got really going)
Do watch "Magnolia" with Tom Cruise
And "The English Patient"
One helped me get the complexities of it, and the other kind of inspires you to be a good caregiver
Respite is for you to rest, refuel your soul and to have some time for yourself.
I would not call her.
If there is an emergency the facility can call you.
Other family members can call her
YOU need a break not just physically but mentally and you are not getting that if you are constantly going to worry about how she is handling the transition.
Any move will cause this reaction. Like the little kid going to kindergarten, the first week they cry, they don't want to go but they settle in and everything is fine.
you need this time for you.
She can be scared and unhappy being in an unfamiliar place.
You should bring her home and ask family and friends to donate a 4-8 hr shifts ea to cover several days, so you can get a break.
You can also hire a Caregiver for several for the week.
You should have your mom home where she feels loved, safe and happy and hire a Caregiver for a 8 hr or 24 hr shift once or twice a week so you don't get burnt out.
Also, places can be deceiving. They can be beautiful to the eye and of course everyone will be nice to you as they want your business.
When you talked to people who rave about it, are they people who actually lived there or people like you that put a loved one in there?
Big difference.
I wouldn't put my loved one anywhere unless there was a camera installed where I could view what's going on 24 7.
I have a 96 yr old Dad that is living in his own home where he wants to be and fir a year now he's had 24 7 Caregiver Care and I have Cameras installed in his home so I can always see how he's being treated.
Please try to focus on your own needs in the brief respite window you are being offered. Do it for your mother's sake.
When you were small did your mom put you on “time out” when she needed a break?
If you are too exhausted and strung out to help your mom, nothing good will result. This exhaustion is what brought you to respite care in the first place. Your mom, in a younger and healthier state, would want you to be okay first. (Even if she wouldn’t admit that now, you will be able to do your best if you get a break).
Take a break so you can do your best. She will be very happy to see you when your break is over.
If your mom's physical needs are being met then step away, many of the problems we encountered had more to do with my expectations and the inevitable difficulties of mom and staff not knowing each other.
🤗🤗🤗
So quit answering her calls and go out and have some fun!! Those 5 days are going to go by fast, so you best make the most of them.
You are supposed to be receiving five days' *respite.* Go away! Stop picking up the phone!
If you absolutely must: call your mother once a day for no more than five minutes, just to tell her you love her, that all is well, and that you will see her on [whatever day].
Your mom will be okay. She’s being looked after.
I'm sorry that after all you've done to get this 5 days of respite that your mom is making it difficult for you to make good use of the time apart.
With all the good things you've heard about the facility providing the respite, it's not going to get any better than that so there's nothing you will be able to say or do that will reassure your mom. I think she is trying to punish you in a sense by saying she is dying.
In 2004 when we had in home hospice care for my dad while he was dying. We were given a chance to take advantage of their facility for a 5-day respite. But in our case my dad refused to go (he did not have dementia and was completely lucid). I think he was afraid that if he went, he wouldn't get to come back home. That being said, he still declined and passed away.
So what I'm trying to say is that it's not in our hands or control as to whether they die. If it's their time to leave this earth, they will whether they are staying in a facility while you take a 5-day respite or whether they are taken back home. If you can accept that fact, you won't keep feeling guilt. She can't "will" herself to die just because you put her in a facility for a few days to take care of yourself.
You've been in my thoughts and prayers since I replied to your previous post not too long ago and there you will remain. Please hang in there for your own sake!
If she dies it is because it is her time, no other reason.