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!!
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 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*?
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.
Have you talked to her hospice nurse about removing some of her medications, or at least lowering the dosages and see how she does then?
You sound like you're definitely at your breaking point, and since you say that mom can't afford someone to come in to help so you can get a break, it may be time to look into placing mom in the appropriate facility. She can apply for Medicaid if needed.
The hospice home will allow her to come for a 5 day respite, along with coming there to die if you so choose. all covered 100% under moms Medicare(but can only be there a week, before she will have to pay out of pocket for her stay).
So you may want to look into the respite through hospice for now, while you continue to look into the appropriate facility for her.
Please take care of yourself. Your mother would not want you killing yourself over her care.
Her profile also says she moved in with Mom so I assume her SS goes towards paying her bills.
Hospice provides respite every so often.
An aide does come in right? Can u ask if they could give you more hours?
Can she get Medicaid "in home". Office of Aging maybe able to help with aides.
2. Talk to the Hospice Social Worker and the Nurse. Tell them that you would like a volunteer that could sit with mom for a few hours each week if possible. Typically it would be a 2 to max 4 hour time limit. The Volunteer can do no "hands on" care. But they can sit with her, get her a drink, do some light laundry if you request.
3. Talk to the Hospice Social Worker and tell her or him that you need RESPITE. hospice will provide almost 1 week of Respite. The Respite can be at the In Patient Unit if there is a bed or they can arrange at a nearby Skilled Nursing Facility that they have arrangements with. This is a benefit that Medicare will pay for each year. Take advantage of it.
4. If she can hold her glass/cup to drink then STOP holding it for her. Place it on the bedside tray and have it within her reach, provide a straw as well. If she wants to drink she can and will manage. (Obviously if she needs help then you have to help her)
Have you checked with other services in your area to see if she would qualify for services through the :
Local Senior Center
Is there a Volunteer network in your area?
Local Area Agency on Aging.
Any of these might have volunteers that could come in and sit with mom.
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.
Can she be moved to a common area where you are usually at during the day and returned to bed in the evening? Perhaps near a window where she can get a different view?
When hospice comes to see her, ask them to give her a glass to drink from and see how well she does on her own. Then when they go, use the same technique they used to get her to do it on her own. Praise any efforts - you seem to be doing much better today at holding the glass yourself, etc.
It's not clear why she has trach and oxy. Is there any possibility she is actually getting a little better? Or that trach could come out so she can talk again? There could be lots of thoughts flooding her brain that she is unable to communicate - perhaps those racing thoughts make her not sleep soundly.
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.
Have you tried a giraffe bottle for water?
Also I agree with many of the other suggestions of leaving the tv or radio on for background noise, bird feeder outside her window would be wonderful if she could watch birds.
I hope you find some peace through this!