Refusing In Home Care

bashnar

Really need some suggestions/help. Mom in middle stage and dad just given 6 months to live. He’s very weak, fighting bed sores from weight loss, and unable to cook. We live 2 hours away and can’t be there every day. Unfortunately they are in a very rural area that simply doesn’t have meal delivery service or even a local pharmacy. In home care started today - they both refuse to move and want to stay in their home which I understand and want for them as long as they are safe. Mom is absolutely livid and refusing care. Explained that they need to be there for dad because he’s too weak to walk and needs help out of bed and to the restroom. She said she can do it. I’m terrified she will fire them. My dad, who has been her primary caregiver, just doesn’t have the strength to fight with her. And she can get very mean, especially now that things are slipping from her control. I just don’t know how to handle it.

aod326

What a tough situation - you must be experiencing a lot of stress and worry. I'm so sorry to hear of your father's prognosis. Is he receiving hospice care at home? I'm wondering if having hospice involved with his care might help diffuse your mother's frustration?

I'm sure others will have more practical suggestions, just a thought. Good luck.

M1

So sorry bashnar, so much to cope with. Do you have POA? Sounds like you need it for your mom at least and possibly for your father too, given what's coming. If she refuses, you may have to see an elder law attorney. She should not have ability/right to fire the caregivers. I think it's frequently said that care needs should drive the decisions and she obviously doesn't have the capacity to make these decisions.....Good luck and keep us posted.

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harshedbuzz

bashnar-

I am sorry for the situation in which you find yourself. This must be so stressful for you.

I do hope hospice has been engaged for dad, but as you pointed out 24/7 is needed at this time. I used my mom' knee replacement surgery as an opening to get help in their home. Your mom sounds a bit like dad at that point- unpleasant at times and with a lack of empathy making it all about him. He claimed to live by the mantra of we take care of our own, but his response a year prior when my mom nearly died on his watch left me on high alert.

I told then midstage dad, that the "nurses" were prescribed by mom's doctor, the alternative to a skilled nursing placement for both while she healed, paid by Medicare (because he was loath to spend) and hired by me so that only I could fire them. He grumbled, but went along with it. 

Two things that helped-

Dad was already seeing a geripsych for medication to level out his moods (Victoria's suggestion)

and we found a terrific young HHA who dad adored

Cobbling onto M1's comment, if you do not have the necessary documents to act on their behalf legally and medically, you need to get that done. Difficult decisions about dad's care and mom's living situation are right on the horizon, it's best you are his POA and that you succeed him as your mom's. 

Now would be a good time to decide what care looks like when your dad passes. If she'll be moving to a MCF, now would be the time to tour and select one or two preferably near you. If she'll be moving in with you, you'll want to prepare the space where she'll be staying. 

Good luck as you navigate this difficult time.

HB

MrsAnnabelLee

Maybe one idea could be to blame the doctor and say "The doctor has given us the choice of moving dad out of the house into a hospital, or having care givers in the house to help him. I don't want dad to have to move so we need to let them in. This is temporary."

Mom's Baby

Bashnar, I was almost EXACTLY where you are now back in early 2010. My dad didn't have a terminal diagnosis, necessarily, but he was in the final stages of heart failure. 

He and my mom lived in the tiny farm town where I grew up, about an hour from the city where I lived at the time. Both were extremely frugal and, while we kids never went without and had a clean, pleasant place to live, we were certainly not rich. My dad was a small time farmer and never made much money, and my mom helped him and took care of the family/house. We always had a big garden, so Mom and Dad grew a lot of our food, watched the grocery store specials, didn't eat out and we did fine. I'm mentioning this because their extreme frugality meant my dad could not FATHOM ever moving to AL or moving Mom to MC. The amount of money that cost... no way, no how. 

Back to the story -- Dad fell in January 2010 and couldn't get up. He was hospitalized for quite some time, then went to rehab (all paid for by Medicare). They discharged him after the term for which Medicare would pay ceased. The doctor said to my dad that he and my mom -- who was probably already Stage 5 at the time, in hindsight -- should move to an AL because he knew Dad's time was limited, although he didn't tell me or any of my siblings that. Dad, of course, just went back home with Mom, who was no longer cooking or cleaning. Most days, she sat in her chair and stared at TV and talked over it. Dad couldn't nap or anything because she wouldn't let him. She couldn't seem to understand he was VERY unwell, either. My sisters and I tried to help, but we couldn't be there all the time as we all lived an hour away. 

Dad would tell me that Mom was "okay most of the time, but sometimes she's not" and then shake his head. I'd tell him, "Dad, you have to let me know when you can't handle her anymore." Now, I know that would've never happened and I should've taken more charge. Gotten them more help somehow. We did have a visiting nurse checking on them and helping with bathing my dad, but Mom did NOT like having them in HER house. The nurses would remove throw rugs and explain they were fall hazards for Dad, and the next time they came back, the rugs would be right back where they'd been.

Dad passed away that April at home in his bed. Mom couldn't really tell us what happened, but it appeared he'd gone to bed and she'd stayed up (her nights and days were getting mixed up, which we didn't know.) 

Anyway, this is a very long story to simply say, please take charge and do what needs to be done. I feel terrible looking back and realizing how bad things must've been for my dad in his last few months on this earth. While I know what i could do for them was limited given their independence and stubbornness, if I could've even gotten someone to sit with them a few times a week, or SOMETHING, my dad might have lived a little longer and have had a less difficult transition from this world. 

Right now, Mom doesn't get to call the shots. Dad is the one whose care is most necessary right now. She can fire them if she wants -- tell the agency to send them back. If she's in the middle stages of dementia she probably won't remember she fired them anyway. Or get people who come on a rotating basis. Something. I wish I had. 

LJS45

I can totally relate to your situation right now Bashnar. I just went through a similar situation earlier this week. A woman from the agency I want to use came to my mother's home to assess/meet her before choosing a caregiver. I explained to my mom that it would just be to assist her with some of the things I have been helping her with. She got very angry and said she doesn't want anybody in HER house! She doesn't remember that she has fallen multiple times, and when I remind her it's a "so what" reply. My mom is married but he works everyday and does not care for her very well. He called me a couple months back indicating she needs help. I think we just need to both move forward with the in home care and take it one day at a time. My mom is easily distracted so that helps. Hopefully the help you get will have special training/experience to deal with issues. I agree with telling your mom that your dad's doctor has indicated he needs in home care/hospice or needs to go to the hospital. Good luck to you and hope you find a solution.

LisaAlix

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ebplionis

Yikes, that sounds so hard.  Others have given some great ideas on the toughest stuff, so I'm just going to drop a quick resource.  I had trouble getting meals to my parents because they were not income eligible due to my fathers pension.  So my sister did research on alternatives.  We found 3 services that deliver food to the house for a fee.  It is cheaper than ready made meals at the grocery store, and safer than my LOs cooking for themselves. It is definitely more expensive than meals-on-wheels, and that's because they are businesses and not a non-profit.  Here are the services we found, there might be more out there. 

- https://www.silvercuisine.com/Home

-www.momsmeals.com

-www.magickitchen.com 

We choose moms meals, and couldn't be happier.  all meals are the same price (easy to budget), under $10 with shipping, and come fresh (big bonus for me).  My parents say the meals are pretty decent, although it does get repetitive.  They even had a diabetes option for my mom, big plus.  It was also the simplest ordering system for us, another plus.  Lastly, after the initial success with my parents, we sent some to my in-laws who live in a very rural environment, and it was also a success!  No guarantee it will be for you, but its a small bit of hope that they can deliver where your parents are.

If these don't help, you can also try stocking them up on compleats.  Think of them as frozen meals that don't need to be frozen or refrigerated.  They are pretty ho-hum, but satisfy that need to have something hot at the end of the day with a microwave.  I stocked my parents up with them at the beginning of the pandemic when I didn't know when I could see them again and before we found moms-meals, and they do in a pinch.

Hope this helps- sometimes crossing off a small thing on your list helps relieve the stress a bit. 

Good luck.

eaglemom

You indeed are in a difficult position. I would highly encourage you to call the ALZ Helpline. The number is 800-272-3900 & ask to speak with a care consultant.

eagle

Daughter_Mollie

Me and my siblings are in a similar situation. My father has been diagnosed with mix dementia and is having a lot of issues with problem solving and self-care. My mom is his primary care-taker, but 1) she is overwhelmed and is not always nice to my dad 2) is having her own issues with memory, but refuses to admit it or get tested.  We have twice before hired home healthcare providers, only to have my parents fire them or refuse to open the door to them. 

We have tried to talk to my mom about how this will help her, and we will get her to buy into the plan, only to have her tell us the next time we bring it up that she does not remember having that conversation, and then she is once again adamantly opposed to the idea. 

The are getting by for now -- no major issues, but it's becoming increasingly challenging.  We are stumped as to how to get my parents to agree to in home care.

Mint

Above post reported

ButterflyWings

I can't add to the excellent advice shared here. Just including this link to anosognosia which explains how/why some of our PWD LOs truly do not understand there is anything wrong with them. 

You just need to work around them and do what needs to be done -- negotiating and reasoning will not work since their reasoners are broken. Good luck to all. We are in this together. 

It isn't denial. Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring