My Grandma is 98 and bedridden. She is not stable enough to trust to walk on her own to and from the bathroom, even though it is right next to her bed, and sometimes on bad days she cannot get up from the bed unassisted anyway.
My Dad and I (her only family) have recently started having in-home caregivers come in during the day to help take the burden off of us being the only ones responsible for helping her. They come during the week and work hours like 7am to 10am, 1pm to 4pm or 7pm to 10pm. We have tried not to overwhelm my Grandma initially because she doesn't like the idea of "strangers" in her home, but the agency they are from has a three hour minimum time, so they essentially sit around waiting for her to need to go to the bathroom since her meal prep and housekeeping needs are extremely basic.
Our issue is even with this additional help she will still call my Dad, sometimes just a half hour before or after they leave, needing help to go to the bathroom. She is on laxatives that have been cut back a bit, but otherwise her hospice providers that handle her medication have essentially told us tough luck and that we (and we is basically just my Dad since I live out of town) need to be on call at all times for these bathroom trips. Sometimes he will be over at 6:30am, 11am, 12:30pm, 5pm, 6:30pm, 12:30am....
Are there any caregiving agencies that anyone has found (preferably paid for through Medicaid which we are in the process of applying for) that have someone "on call" for things like this??? Even so, I'm not sure they could get there fast enough to get her to the bathroom in time.
Does anyone have any solutions beyond a nursing home or having permanent in-home help all day, which I don't think is going to go over with my Grandma?
Her acceptance of the current reality varies depending on her mood. Though not diagnosed, we believe she has some mild dementia starting and has probably had undiagnosed depression for years.
I believe she overall understands that she really can't use the bathroom on her own. That said, she has managed to go a couple times recently, but it's honestly a 50/50 chance she'll fall. A couple times she nearly cried at the thought of someone coming for three hours when she wants to be alone in the evening to watch TV, or sleep in the mornings most, but she hasn't asked us to cancel any of the appointments so far, which was our fear. I get it to be honest. Three hours is a long time to have someone you don't know well sitting around in your living room. We try to build up tasks for them to do, but with someone there five days a week there just isn't much.
She constantly guilts my Dad for not doing enough even though his life essentially revolves around her at this point. She questions how much time he spends with his girlfriend, if he's going to spend the night with her (she lives out of town) when she should know he can't because he needs to be on call for her, she claims that she "doesn't know if he's going to come" when she calls him for help even though he always does...
I anticipate that a tough conversation is looming where we need to basically say, if you don't want to be in a nursing home, you need to have people over here all day to help you when you need to go to the bathroom. Guess I'm just grasping at straws to avoid that because we are both dreading it.
So the caregivers that are there for 4 hours should check her at least 2 times. If you have changed her when she wakes they maybe could do a check and maybe change when they arrive then check mid shift then again before they leave.
And if I am reading this right..PLEASE correct me if I am wrong...Dad comes at 6:30, 11:30 in the morning then again at noon, 5, 6:30 and midnight. Is she alone the other times of the day or are the caregivers there during all the times when he is not there? If she is alone that is not a good situation.
He should stop responding to her calls when there is a caregiver there. He can answer the call but the caregiver should be doing the work that needs to be done.
For example, last night she had a caregiver from 7pm to 10pm, She called my Dad at 12:30am having to go. Otherwise she would typically be alone at night from 10pm to about 6:30am (when she has been calling my Dad to use the bathroom, even though we'd prefer she wait until a caregiver could do it when they come at 7am).
Similarly, she will often call around 11am needing to go, when a caregiver will have been there from 7am to 10am and someone will be coming again around noon.
She does not call when a caregiver is there. She is alone at times, and that's when she calls. We wish we could get her on a schedule so she would not have to go when no one is there. She values time to herself and doesn't even love having the caregivers there for three hours at a time right now, but if she can't get on a schedule we don't know what the alternative is besides more caregiver hours?
Prior to my husband getting his supra pubic catheter, he was having to get up to pee every hour on the hour, which meant neither one of us got any sleep. It has been a Godsend for us, perhaps you might want to look into that for your grandma. A urologist also can treat overactive bladder with medications, and also botox injections into the bladder. We tried the botox, but it didn't help my husband, but it is an option also. Good luck. there are no easy answers, especially at her age.
You pay a lot for the aides. They should be busy when your Mom is awake. I have been a personal companion aide with an agency for 6 years and rarely just sit around when my client is awake.
So many aides talk about the "hard" work and just sit around playing with the phone.
Sometimes clients would much rather have help from a family member, but that's not what they tell the caregiver. E.g., this morning:
[Self] Would you like to go to the bathroom before we get dressed, Mrs L?
[Mrs L, calling DIL] Sue! Can you come and help?
Caregiver then has to do some fast talking and fancy footwork combined, simultaneously heading off helpful family member while reassuring client that bathroom routine is included in her support plan, and that therefore it's part of our job.
It's very difficult for well-intentioned resident children to sit tight and close their ears to the cries for help. I expect it's also difficult for your father.
In the working pattern you describe, it should be possible to establish a toileting routine. Note: this will probably NOT cut out all of the calls to your Dad - because when a girl's gotta go... But it should cut them down.
The point to discuss with the aides is that your grandmother will need encouragement to take her opportunities. This should be easier if they work to a schedule. Grandma is quite likely to refuse/decline their offers, especially at first; but with explanations, persuasion and reassurance she may begin to co-operate.
They can't *make* her go, of course. But they can offer on the hour, or thereabouts, making each offer a brand new one and not an impatient-sounding repetition. I've personally found asking "would you like to go while I'm here to help, just in case?" goes down quite well. It is not unusual for it to take two or three visits before a client feels comfortable enough with you to welcome you into the bathroom (or even to just outside the door).
It is also not unusual to hear
I've just been.
I don't want to bother you.
No thank you, don't worry, I'll be fine. [unspoken - I'll wait 'til you've gone and then stagger there myself and hope for the best]
Not at the moment. [unspoken - "but the moment you're out of the house..."]
It's not a bad idea to look for signs of genuine anxiety about your accompanying someone to the loo. If the person seems actively fearful of your witnessing a bathroom visit, it can be a sign that there is a *galloping* infection, rash or odour that the person is terrified someone might find out about.
Other things I have tried with success include:
reading the care plan out loud to the client ("it says here...")
"noticing" that clothes are on inside out ("shall we pop to the bathroom and straighten that out..?")
asking to be shown where everything is "just so I'll know next time."
When you say the bathroom is right next to your grandmother's bed - does she have, literally, a bedside commode?
If your grandmother is not incontinent but is immobile, then I expect she will resist continence aides such as pull-ups and bed pads. But they're still a good idea, because they will give her peace of mind. It's one thing to wait for ten minutes, another to wait for ten minutes and be terrified that you might soak or soil your mattress. They will also help avoid her struggling to get up when she shouldn't, AND falling and hurting herself, AND having a bathroom accident as well - doesn't bear thinking about!
Can you reschedule the aides to be there when she typically has a bm? If she goes at 11am most days, change the hours from 7 to 10 to 9 to noon, if she sleeps in this would be better anyway. Maybe 2 four hour shifts with different hours would work better anyway.
Is she alone as in your dad lives some place else? Because she probably shouldn't be left alone in the house at all.
She can't control when she has to go, so you wanting her to go during certain times is unrealistic and you will be able to handle it better if you acknowledge that. But you can keep a log book that gives the times she ate and then had a bm, you might see a pattern.
If grandma can understand what is going on, you should have someone tell her that she needs to utilize the aides while they are there or she will have to have hired help 24/7 or go into a facility. Then she might decide to be a little less uncooperative. I would also have a woman tell her that she should not ask her son to deal with this if at all possible, it is unfair to put him in that situation. (I know lots of sons do it, but I don't think that anyone should put their children in that position, dad no daughter, mom no son, sorry just my personal opinion.) Maybe she loves him enough to use the aides if someone else told her how hard it is for him to clean his momma. My sister was always wet and we encouraged her to get a catheter so that her caregivers were not having to spend hours cleaning her up every day and night, she died of cancer so she was able to tell the caregiver when she needed to have a bm and they dealt with it using chux. She was 100% bed bound and could not be moved easily because her spine was eaten up with cancer and would break if she moved much.
I have never heard of an on call toilet service. Odds are it would not work because people can't usually hold it long enough for someone to get there from a different location. It would probably be very expensive as well.
I would have the aides toilet her when they get there, halfway through the shift and right before they leave. The activity would be good for her and it would hopefully help with the number of times she is calling for your dad. It would probably get her bowel moving as well.
I am sorry that you are losing your grandma. May God give you strength and wisdom during this difficult time.