A couple of weeks ago, it became necessary for me to place my mother in a nursing home. I won't go into the guilt this decision has stirred up, and I thought I was handling it pretty well, considering...
But for the past week and a half, my mother has deteriorated rapidly. Her first few days there, we noticed an improvement. But I went in one day last week and found her mental status altered. She was way more confused than usual, and she's talking all sorts of weird stuff. What this looks like to me is her past pattern of UTI/dehydration, which landed her in the hospital three times in the past two years. She is also collecting fluid in her feet and hands, and having some trouble with breathing.
I know she's not getting her Parkinson's meds on time, and who knows what other meds are being administered incorrectly or not at all. She's unable to lift a cup to drink from, so I rely on nurses and CNAs to keep her hydrated when I'm not there, and from the looks of things, that's not being done either. Her mouth is so dry, she can hardly talk sometimes.
I'm there every day to feed her lunch and dinner, so I know what times she's supposed to be receiving her meds. When an hour and a half has gone by and the nurses haven't shown up with the medications, I go looking for them. I don't like having to do that.
I've spoken several times to the nurses (including the Director of Nursing) about my concerns and they always smile in that patronizing way and reassure me that everything will be fine, but I know my mother. This is NOT her "normal."
I'm pretty worried. My instinct is to get her out of there. Is this just a sneaky variation of nursing home guilt, or is there real reason for concern?
Normally, I'd say this time for your mom is just an adjustment period but I don't like the patronizing way your concerns about medications were addressed (or not addressed) by the nurse. Medications need to be given in a timely manner. I also don’t like the fact that her issues point to the same things that she’s had in the past and these issues are being ignored.
This paragraph you wrote concerns me and should concern the nursing staff:
"But for the past week and a half, my mother has deteriorated rapidly. Her first few days there, we noticed an improvement. But I went in one day last week and found her mental status altered. She was way more confused than usual, and she's talking all sorts of weird stuff. What this looks like to me is her past pattern of UTI/dehydration, which landed her in the hospital three times in the past two years. She is also collecting fluid in her feet and hands, and having some trouble with breathing."
If they don't listen and take action to make sure that your mom is tested for a UTI, then I'd suggest that you talk to the administrator. Many nursing homes are outstanding, most are average, but some are very poor. That's why family members need to be advocates. Not adversaries, but advocates.
If you truly feel that your mom's needs aren't addressed even after you've tried everything, go to www.ltcombudsman.org and type in the nursing home Zip code. Contact the person listed. He or she is your representative. I'm hoping that you won't have to go this far, but I wanted you to have this information for reference.
Please keep us posted on how things are going as you move through the system. You're going through the toughest part of facility care issues - trying to figure out if they are doing the right thing or not.
Try to take care of yourself, too.
Carol
It's only been 2 weeks. Your mom could still be reeling from the move. Any kind of move at her age would be devastating and add the dementia to that and this is what you get. Give her some more time to get acclimated, to get used to her new surroundings and used to the new routine. Routines are very important with someone who has dementia and 2 weeks isn't really enough time to establish a new routine. You may see your mom level out as time goes on.
And like jeannegibbs said, guilt comes with the territory. Telling you that you have nothing to feel guilty about is easy but I hope you'll go easier on yourself. When my dad went into a NH I felt guilty too although I was unable to care for him at home and had no other alternatives. It's just part of caregiving.
I assume that the decision to place Mother in a care center was because she was getting worse/exhibiting more disturbing symptoms/needing more care than she had before. She has a number of chronic conditions all of which do get worse over time. I can speak personally about the Lewy Body Dementia. That is a VERY up-and-down-and-up-again disease, with good days and apparent improvements mixed in with bad days, and the overall direction is downhill. So it is possible that Mother would be in the same state of confusion at this point no matter where she is or who is caring for her. Dementia gets worse. It is what it does. But it is a natural caregiver reaction to wonder if we did something or didn't do something that made it worse. Guilt seems to be part of the job description. :(
If this looks like a UTI to you, I hope you have asked to have testing for that. If it has happened to her 3 times in the past 2 years, then I don't think you placing her in a care center is to blame for it this time. Just advocate for testing and shake off the guilt about it.
Getting her meds late, assuming she is at least getting them, may or may not be contributing to her decline. Can you have a calm discussion with the DON, and go over her med list? Explain why the exact timing of each is important (if it is) and ask if there is a way to help expedite reaching the target times. For example, how many times per day does Mother get meds? Is there any way to combine some and shift timing a little and reduce the number of times? Would that help the staff? It is their job to give the medications when they are due (within an allowed variation) and that is exactly one of the services you placed your Mother for. Keeping her hydrated is their job, too. While being firm about expecting them to live up to their responsibilities, also let them know that you are sympathetic to their constraints and would like to work with them in any way you can to make this easier.
I think it may be too soon to consider getting her out of there. What can and cannot reasonably be expected in a nursing home can be kind of a shock. This is not one-to-one care, as a caregiver provides at home. But it is around-the-clock care by trained people. I'm just suggesting that the next placement may fall short of your expectations too, and it may be your expectations that need some adjusting.
Mother needs you as her advocate. I feel really sorry for folks who have no one to look out for their interests. You are right to be concerned, and Mother is lucky to have you there to investigate your concerns and take actions if needed. If you can't get satisfaction on when pills are administered and/or on hydration, talk to the Ombudsman, and even consider finding a new place. But I'd try to work this through with the staff, first.
About the meds -- I think it's part of the 'beast' of nursing home care, i.e., everything is on scheduled come h*ll or high water.
Strange, but nobody ever told me that the end of life would be like this. We are so shielded from seeing how people actually decline and in the end die that when we are looking at it up close, it's one heck of a scary thing.
I hate it!
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