Providing Care while Step-Dad is in the hospital - feels like drowning

kyronae

I sought out this group because I've been the sole care-giver for my mom during this week while my step-dad is getting knee replacement surgery. My mom is 62, with EO Alzheimers. She's mostly non-verbal and hovering at the edge of late stage symptoms (she can brush her own teeth, wipe after the bathroom, etc...but she can't navigate rooms, feeding herself is almost impossible, dress herself, etc). 

I'm her only child, and I've been her caregiver before when Ed needed medical help, but this is the longest stretch I've done this and it's the most advanced she's been.

Ed's return home has been delayed because of complications (nothing surprising..just high pain levels and an inability to use stairs), and so I've been here for the week in a house that is woefully ill-equipped for taking care of either of them. The bedroom is upstairs with a bed that is higher than my waist (I'm 5'9"...my mom is 5'3"), walkways are cluttered, they don't own a gait belt. I had to buy a shower stool so I could help with bathing.

For two out of the past three days, my mom has been varying levels of distressed. On Tuesday, she had severe constipation that had us both crying in the bathroom -- her begging for her mom and me not knowing what to do.

Today...I don't know. I'm unsure if she realized that Ed isn't here and she's scared, or if she's got digestive pain, or if she's just sad. But she's been crying almost constantly and not saying even as much as I usually get from her ("Baby," "water," "Yes/okay").

My step-brothers are going through their usual routines, while taking time to visit my step-dad and maybe swing by with supplies. I'm alone in the house with mom, just trying to figure it out. There's so much I feel I don't know, and I'm so afraid I'm screwing everything up. And I'm terrified of how this will go as Ed recovers. I can only stay until Sunday (I live 2 hours away), and he's certainly not going to be able to do everything for her. But he hasn't even started to talk with folks about providing in-home care.

I'm tired and depressed and drowning. I just need to not be alone....

M1

Well at least everyone here can listen. Since tomorrow is Friday, call and arrange an in-home caregiver for both of them. Don’t wait or you may regret it. You can figure out how to split the cost later.

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towhee

Hi Kyronae, welcome to the boards, though sorry you have to be here. It is really hard to realize just how impaired our loved ones are. We just don't get a good picture unless we spend several days with them sometimes. And, sometimes the primary caregiver minimizes or just is not good at communicating actual conditions.

You have two care situations here where each impacts the other.

One-your stepfather.  Someone in the hospital, after surgery, in pain, is not in shape to be arranging care for another. That person actually needs someone to be their advocate in the hospital setting and in discharge planning. I hope your stepbrothers are doing this. The hospital is in charge of making sure that the next care setting for the patient has the level of care the patient needs, but they need all relevant info and sometimes some family pressure. Your stepfather is not going to be able to handle care for your mom without risking ending up back in the hospital. So care for your mom has to be in place before your father comes home, with a back up plan.

It is very likely that your stepbrothers also have/had no idea of your mothers condition. If you have not told them it is important to do so. Your father does not have to arrange for care himself. So long as someone has his permission, or has POA, and the home health company knows they will be paid, anyone can do the legwork. It takes time to arrange for care, usually days, do not wait.

Your mom-her care will suffer as well if you do not have adequate care in the home. If care can not be arranged can your stepbrothers or their wives help?  About the hard bowel movement, contact her doctor. If you are on her list of contacts the office can talk to you, but in any case you can let them know what is going on. They could possibly send out a home health nurse. You could also find out if palliative care is available in your community. 

If your stepfather has significant medical issues, or even if he does not, you need to be more in the loop about your mothers condition and at least have a HIPPA release for her.

Don't worry so much about the physical care, we mostly learn by doing and this board can help with resources.

kyronae

He's a former lawyer and holds POA.

I'm a grad student with very limited finances and no authority over her care. We get along...but listening has never been his strong suit. My older step-brother and I are constantly having to push to get him to listen to our advice.

Thank you for the step-by-step. I'll start working on that tomorrow. The hardest part is going to be arranging payment....I can't do anything, and he's not going to want to cooperate.

On the other hand, I knew this was coming (though I hoped he'd be home earlier in the week so we'd have more time to deal with the permanent solution). I have two local friends (one who is a certified nurse and one who is an amazing nursing assistant) who have volunteered to check in and help periodically this week. It's by no means a solution and an insanely generous offer that I don't want to get taken advantage of, but it gives us a little extra time to work through details if needed.

I'm hoping that his inability to do stairs will at least get him to agree to let us turn the downstairs living room into a bedroom. It would be so much easier for BOTH of them, and it would let us avoid the falling risk for her. I've tried to argue that, but he gets insulted about how he wouldn't let her fall....never mind the additional difficulty of his knee and her instability.

I'm so tired.

kyronae

My step-dad is a loving man who is highly resistant to letting any of us help. I've tried to get permissions to be more involved with the doctors, but it never goes anywhere. He says he'll see about it, and then doesn't do anything to pass the information on.

My (step) brothers live 5/10 minutes away (respectively) and they are aware of the situation, but my little brother is very much like his dad - he's not going to make waves. My big brother is my advocate and on my side, but he has less at stake than I do. He wants everyone to be okay, but he's not going to put everything aside to be here.

I'm more likely to make that sacrifice, but I can't afford to right now. I have a job that already got neglected all week because mom's distress meant that I was by her side every hour instead of working on files.

RanchersWife

Don’t ask your step dad about changing the living room. Ask your brothers to come move the bed. 

Buy a baby gate for the stairs and install it. 

Tell your brothers you’re leaving and it’s their turn to get the care set up. 

Step dad will breath a sigh of relief when he comes home and is able to rest. 

kyronae

RanchersWife wrote:

Don’t ask your step dad about changing the living room. Ask your brothers to come move the bed. 

Buy a baby gate for the stairs and install it. 

Tell your brothers you’re leaving and it’s their turn to get the care set up. 

Step dad will breath a sigh of relief when he comes home and is able to rest. 

God, that would be so satisfying. lol. I'm not sure I have it in me.

I mean, I totally have it in me to send one of them to get an ikea bed and install it tomorrow, but I can't walk away until I know they're both going to be okay.

I tattled to the care coordinator at the hospital (she was calling to set up rehab appointments and I was frazzled and at the end of my rope). I begged her to talk to her supervisors and get the doctors to tell him he had no other choice. Maybe he'll listen to them if he won't listen to his kids. 

That'll probably get me into a fight with him, too, but if it gets them cared for, I can deal.

M1

You didn't ask, but for the constipation: get some prunes if she'll eat them (2-3 a day), and Miralax,(polyethylene glycol) is safe for everyone. Dose is one capful in a cup of water once daily, that will keep her out of trouble. Would be good for your step dad too while he's on pain meds.

towhee

It is very hard to realize that sometimes we have to parent our parent. It is difficult to breakaway from those old patterns of behavior. You did not tattle. You did what you could to keep your stepfather from endangering your mother. The both of them falling down the stairs does not bear thinking on. Your stepfather will be probably be experiencing aftereffects from the anesthesia and pain medication for a while, making his judgement even more unreliable. I hope the doctors can help. You did great. Please get the bed.

The discharge planner is supposed to go over all the equipment a patient will need at home before they discharge, but unless one of your brothers is there during that conversation you might not get that information. One thing I know is that if you do not have a comfort height toilet downstairs you will probably need an extended height toilet seat. 

Wish you well

Iris L.

M1 wrote:

: get some prunes if she'll eat them (2-3 a day), 

Or baby food prunes if she can't chew well or prune juice.

You may insert an adult glycerine suppository about 3 inches into the anal area with a gloved finger.  Have her on her side with one knee pulled toward the chest.  Wait about 5 minutes to allow the glycerine suppository to melt and activate.  

Is she getting enough fluid?  All older adults have less thirst and may not drink enough.  Also many areas are having heat spells now.  Even mild dehydration worsens constipation. 

Iris L.

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harshedbuzz

I am so sorry. 

This is a hair-on-fire emergency. We've been through 3 TKRs in the family w/dementia and they are no small thing. Mom's first when dad was in the middle stages wasn't too ghastly. But by the second in stage 5ish, I had a cousin stay with dad and cobbled together a care team that included myself, some HHAs (some the accents neither could understand and one that stole jewelry) and a visiting PT. Mom had no complications and was home in 2 days and still it was a challenge. She could just about care for herself and dad was not at all empathic. In retrospect, I should have turfed them both to a SNF- him for rehab and her for custodial care. Dad wouldn't have needed that level of care, but MC respites are a minimum of 1 month near me and I knew the SNF would take dad on the fly as opposed to with a pre-admission medical exam and deep dive into finances. 

I wonder if you could reach out to the team arranging his discharge and explain the situation at home. Perhaps you could even send a picture of the parts of the house that are unsuitable as they relate to him.

Cobbling on to something M1 said. Miralax for mom is a great idea. But don't go there with  DSD without checking that he's not already taking something for constipation. When I had my TKR, the surgeon sent me home with a prescription for Colace as part of the 11 item cocktail of meds. 

kyronae

Thank f*@^%ing God....he gave me permission to start arranging care at any cost. So I can do my thing and not worry about it blowing up into a fight.

He's also coming home today.

This has been a hell of a week, but it's going to be okay. 

Thank you, everyone, for the advice. I'm on hold with the alzheimers support line right now.

abc123

Hi. I’m just checking in to see if he got settled in at home. I sure hope everything works out well for all of you.