My mother has been on hospice care almost 5 months. I am her only caregiver. She sleeps 45 min and then wide awake regardless of medications given for sleep. She has a trach and on oxygen so she’s unable to call out for me, so she’s constantly banging her cup against the bedside table. After several times of checking on her, she continues to bang the table, this goes on for hours, day and night! She also refuses to do anything for herself. She will not even hold a glass to drink. She expects me to do it for her!!
I appreciate you must be exhausted to the point of mental breakdown (that's why I said ridiculous - no one can be on duty 24/7 and it's a wonder you're still standing) but you speak of your mother as though she's being a spoiled brat when the lady is dying. She's trach'd and on oxygen, both must be extremely uncomfortable. With breathing issues like that, I shouldn't think she's cognitively all there either so I doubt if she is aware of the passage of time and how long it is since you checked on her. No, she can't hold a glass to drink. There are special bottles you can get which attach to the bed frame and have a straw on a long tube coming up within the person's reach, so that they don't have to hold the weight of a drink or manipulate it, they just control the mouthpiece. I'll see if I can find any trade names...
Here you go (just an example, not an endorsement)
The Hydrant One Litre Drinking Bottle with Tube, Latex free
Features cap/handle/hanging bracket, drinking tube with bite valve and small clip to attach the tube to clothing
Hangs from bed, chair or wheelchair
Measurement intake lines
Bite valve opens under pressure and closes when released so there is no leakage
Then at least you take the cup away - but unless 2 hourly checks are provided she has to have some means of communicating.
There's no way round it - you need more people. What are hospice *doing*?
Being your mother's only caregiver with this level of neediness isn't a good idea. Why not hire someone to come into the home to give you respite for 4 hours a day, every day, using your mother's money, of course? The CG you hire can hold the cup for her while she drinks and do whatever else mother expects you to do for her all day long.
Also, being that she's on hospice care, has the nurse tried morphine and Ativan to help your mom relax and sleep for longer than 45 minute intervals? Now that she's at the end of her life, it's imperative that BOTH of you get some rest. Definitely speak to the hospice nurse about this issue she's having, and ask that the proper meds be prescribed to INSURE that mom gets sleep every night and calms down the agitation she's showing by banging her cup for hours on end.
Best of luck with a difficult situation. Sending you a hug and a prayer for a resolution to this matter, for both of you.
I wish you the best. I know it's not easy being the only person responsible. They do expect you to do everything, even perform miracles.
I've done in-home caregiving for a long time and have had clients who were a lot better off than your mother that refused to do anything for themselves. You have to make them do it. Any level of independence no matter how small is important. If your mother can still drink on her own, get her a plastic sippy cup like for a toddler. Don't hold the cup for her. Don't go running in to check on her every few minutes either. You need to get a night's sleep too. What happens if you finally collapse from exhaustion?
You know how when you board a flight the safety drill is always that if the oxygen masks drop down to put your own on first? That's because you won't be able to help anyone with their own if you're collapsed and passed out. Same thing here. You won't be able to sustain being a caregiver if you don't have rest and care for yourself. Bring in hired help. Even if it's just a sitter to stay with her at night. You can go private and negotiate the pay with them.
Also, she's on way too many drugs. Sometimes when there's a combination of so many they don't work.
I'd suggest you ask for a care plan meeting with her hospice team...even if it is by Zoom or some other video resource. Meds may need readjustment, O2 may need readjusted, etc. Straws cause a higher rate of aspiration, she likely does need the cup held for her so she can sip safely, and her body is weak at this point. Her cognitive function is impaired after such a long illness, so think of her as living only in the moment..her moment and her reality. Her fear and anxiety sound very high, and removing her only means of getting attention when she is scared is likely to increase her distress.
The current situation isn't working, for her or for you. She's is not in any state of comfort, you are burning out as a caregiver.
I'm concerned something may happen to you in your exhausted state.
What happens if you fall and break an ankle?
Talk to her social worker about starting an application for Medicaid, as eligibility starts when the application is accepted...and then you have a time period to furnish necessary documentation. The nursing home will bill her as private pay, but when Medicaid approved, they will pick up that bill.
You've done an amazing job caring for her...but this is too much for any one person to handle.
Unfortunately, many nurses can't do what they need to do in regard to a loved one. Sounds like this may be the case here.
You are not getting any help from the family so it is time to make the right decision for both you and your mother.
Take care of you.
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