I love my Mom, really I do. But I work full time (from home, but still full-time). We go to bed at 9 and I get up at 4:30 to start my day and try to have a few hours of work in before she wakes up and needs some care. Often times I only need to get her up and let her use the bathroom, clean that part of her body, put on a fresh pull up and either get her back to bed or into her recliner until the hospice aide comes to finish her morning routine. So I know I am blessed to have help.
BUT she has started not being sleepy at bedtime. I can see on the nursery monitor that she checks her watch every few minutes. I try to sleep anyway. At about 10:30 she calls out to me and I can hear it on the monitor. Usually she has to go to the bathroom. Her bladder has a mind of its own. She can sit on the commode for a minute and not go, but 10 minutes later be incontinent. It's not her fault, I know that, so I am not upset when she needs to go at 10:30. However, she has started wanting out of bed at around midnight too, thinking it's almost dinner time. I open the blinds a bit and she can see it's dark, I tell her it's the middle of the night, and she says she will go back to sleep.
The doctor ordered Dalmane a few months ago to help her sleep but after 3 nights, she was a zombie. She's on an antipsychotic because she thinks "they" changed the TV station when they found out she was watching, or she thinks someone is taking her money.
One night she got out of bed shortly after bedtime (crawled out between the bottom of the bedrail and the foot of the bed, thank goodness for the bed alarm). When I got back there she was frantic. She needed to get "stateside" back to my house. She thought she was in Alaska with my sister. She thought my other sister had her check book and she didn't know what she was going to do when she needed money. I was able to calm her down after about an hour, but I slept on the couch in her room in case she became scared again. She got up to use the bathroom in the middle of the night but otherwise was OK.
All of this is loosely related but are all examples of why I'm not getting enough sleep. Although my job isn't rocket science, it takes a fair amount of concentration and we have a productivity level to meet.
Does anyone have any ideas on how I can get enough sleep to function? I was so tired last night I wanted to just turn the bed alarm off, unplug the baby monitor, and if she got out of bed, she got out of bed. I would be happy to let her stay up after we went to bed, but she is unsteady on her feet, falls often, is 92, has osteoporosis, and I'm afraid she will fall (she does fairly often) because she forgets to use her walker.
During the day she doesn't nap. She sits in her recliner and stares unless someone actively engages her. One sister calls 4 times a week but more than half the time Mom doesn't comprehend the conversation. She doesn't want to watch TV. I see her reading her Bible sometimes. Sometimes I can get her to color. When we have laundry, she folds and that makes her feel useful but it's to the point we need to refold (which is OK).
Anyway, sleeping too much during the day definitely is NOT the reason she is awake at night. It's like she's anxious about something, so much so that she can't sleep at night or is afraid to sleep. Even when she's sitting in her recliner and staring, usually her hands are fidgeting.
Can anyone offer something I can try. She is already on some meds that should help her sleep but it isn't working anymore.
Thanks for listening!
:)
hope you’re well :).
how to sleep more, you and your mother?
you said she’s anxious.
it’s not easy being an elderly person. i don’t know how any of us will truly behave when it’s our turn. one thing is theory; another thing is when it actually happens to us, and we are elderly.
we human beings need things to look forward to, no matter what our age.
even though your mother has problems understanding conversations, maybe it would help to be less stressed/anxious, if she has something wonderful to look forward to?
hug!!
bundle of joy
definitely tell the nurse. She may need different meds.
if not already, try to get others involved in rotating care - you need time OFF. It’s impossible to care for someone when your tank is empty.
Has the chaplain/ minister come to visit from church or hospice? She may be in emotional or spiritual pain and not able to verbalize it.
I highly recommend music. Her own CDs or music. We have Alexa play meditation music from Amazon music or we put on my MIL favorite music CD. Sometimes that helps.
Audio books also help my MIL. Calm, sweet book titles read in soothing tones help her also.
Am in the trenches with you. Prayers and hugs.
As well try herbal essence oils like rose oil, and or lavender. Put about three drops on both sides of the pillow before bed.
White noise can be downloaded from youtube. I prefer the flute and waterfalls one but there are many different types.
Sweet dreams.
I told DH, that if he ever has the issues you are describing at night, we will need nighttime care. I can handle caring for him during the day as long as I get a good night’s rest.
Generally, most people need 7-9 hours of uninterrupted sleep every night. Your not getting that and this is why you feel so tired in the morning. You have good strategies in place to notify you if your mom needs help at night, However, you are still not getting enough zzz's. Here are a few ideas to consider:
1 - Let the hospice aide do ALL of your mom's morning care. Use the time saved to get a little more sleep. While the aide is working you can be working.
2 - Get a sitter for the "night shift." This person(s) can be awake while you sleep and tend to your mom's needs. Ask family, friends, members of your faith community, and/or paid help to watch your mom from the time you go to bed until you get up. Local nursing students and CNA students might jump at the opportunity if you pay well and include some snacks and drinks.
3 - Line up adult day program for your mom. Soon most states will allow (if not already happening) adult day programs to function for seniors. Check with local nursing homes and stand alone day programs in your area. Your mom will be engaged for the day and you can get work done, and maybe sneak in a nap or 2.
Tge only meds she should be taking are the ones that would actually kill her if she stopped.
As far as meds go , LESS IS MORE. Seniors are on far more meds then they should be and every med has side effects which causes a rx for more meds.
At her age, She should only be taking what would kill her if she stopped, which probably is none to maybe 1.
My Dad has been off all his Meds for 3 yrs and the only change is he has to wear a Cathiter so he can pee as he has an enlarged prostate.
I give my 96 yr old Dad a 5 mil Melatonin to help him sleep thru the night.
Put something at the end of mom's bed where she can't scoot out at the end.
Play some soothing music for her to fall to sleep by and let her have a cup of
sleepy time tea right at bedtime.
Put a snack and drin by her bed table so if she gets the munchies for a snack, it's within reaching distance.
Prayers
My husband and I discussed having someone stay at night but we are not comfortable having someone in our home while we are asleep. Call us paranoid, but have heard horror stories.
Vented to, brainstormed with my other sister and came to the conclusion that I should probably take advantage of unscheduled intermittent FML to get rest for the times when I need it. Does anyone know for sure if "resting" to recover from a difficult night of caregiving is considered a legit reason for usage of FML for a parent, or do I need to see my doctor for FML for myself?
Told my husband that I was about ready to ask my brother to come get Mom for a few weeks but he said they would never bring her back and I think I'd rather die of exhaustion than have her move 6 hours away.
Thanks for listening, for your encouragement and suggestions, and if you know the answer to my question about FML, please let me know. Thanks!
I filled out FML papers for my job and my doctor signed them. They are inly good for so many weeks a year. Mine stated my mom had dementia and I was the sole caregiver. I explained and put it in writing that this would not be full time FML but I would be taking it intermittently. Mom’s doctor appointments, caregivers not showing or as needed for moms care. (Do not say to catch up on sleep). The job signed off. When I needed time I let my boss know, it could be an hour or 8 hours. The catch is you have this time without pay or you use leave for this time. My time card would show no hours for the FML. Each week I submitted a letter with ours used for FML. Doing it this way my hours lasted the whole year and I was able to renew the FML the next year. I hope this helps.
Getting someone to stay at night is a good answer too. My sister has offered to stay any Friday or Saturday night, but when she gets tired she goes off the deep end. She stayed the night right before Daddy passed and the next morning she accused the hospice aide of not taking care of Daddy properly, ripped a camera off the wall that my brother had set up so we could keep an eye on Mom and Dad without being in their room, and demanded I choose between her and my brother. I'm not quick to think on my feet, expecially under stress, and since my brother was paying for 20 hours week so I could have an aide to help take care of Daddy, I naturally chose my brother. My sister eventually forgave me, but she and I have a delicate relationship and, as I said in a previous post I think, one time her behavior was so bad that my husband told her she was not allowed at our house anymore.
I've asked Hospice to do a urine test on Mom for sudden behavior changes but they declined unless she has a fever or pain when she pees or back pain in the kidney area.
Mom's first 6 months of hospice ends in April unless she requalifies and I'm not sure she will, although she has lost several pounds (started out at 98, down to 91 now). If we lose hospice, we will be paying out of pocket for her care with her money (she refused to pay for Daddy, but I have her check book now and I won't hesitate to hire someone to help with her care so I can work).
I guess my husband and I are care-givers at heart, but when Mom is gone, there are no parents left and we truly hope that none of my siblings or our children need to move in with us. I would love to have some time alone with my husband before we pass. :)
Thank you all for listening and for your kind compassion and wonderful suggestions.
mid hospice won’t run the test I suggest doing what I said - get the urine test strips at Walgreens or Walmart etc and test her yourself and then give them that info and request it. I am upset that hospice doesn’t understand most elderly have no symptoms and have conditions that prevent them from recognizing. That’s basic elder care 101. Most elderly DONT know they have a uti because they don’t have the normal fever or burning etc. but lie if you have to and say she is saying she has burning while going to the bathroom. These people are all getting paid and demand what you feel is best. We are not on hospice so I’m not knowledgeable about their rules but maybe someone here can help with how to get them to test her urine and electrolytes/hydration. Being dehydrated can also cause this stuff along with why elderly end up with UTIs. Get the test trips for your own peace of mind.
Praying for you to get some answers and much needed sleep. 🙏🏼
One suggestion - don't worry toooo much about mom falling, etc. Of course, if she has a history of falling, it is quite likely that this will continue. There is only so much you can do about that and if/when she falls, it will NOT be your fault. I'm 99.99% sure that you are providing a safe environment, but no matter how well someone is supervised and how safe it is, people do fall.
If her meds aren't helping her sleep, don't give up. Talk to her doc about it again. The med that worked but then made her a zombie? Maybe the dosage needs to be reduced a bit and that might work? Worth asking!
I agree that getting a night time care giver at least a couple/few nights a week would be very helpful for your situation. Then you could actually unplug and get a good night's sleep. I'm quite sure you could really benefit from that!
I care for my mom and she is left side paralyzed from a stroke so I do know the incontinence issues as how that can literally eat up half the hours in a day.
I am not sure if mom would try it but I use an “external urine catch vacuum”. Maybe you have seen or used them in the hospital before? It can be used all day or even just for overnights to keep them dry. Medicare just approved the pump and supplies this month (I had been paying out of pocket for them and though expensive it saved her skin as well as many hours in my day). It’s called the “purewick” by liberator medical - google it. It is worth a shot if she will use it. I would say it catches 90-99% of moms urine all day and night.
behavioral stuff I am still navigating from what is stroke behavioral - what is possible vascular dementia and what and when it’s UTIs and electrolyte imbalances - (mom isn’t on a lot of meds so hers are not med related). So my first things to check are always UTI and potassium. I have the bloodwork done in home now (if ur unable to take her as the dr to write it up and they will come right to your home as well as pick up urine samples). Or schedule a visit to her primary - u can even get the urine test kits at a Walgreens etc and tear from home to rule that out before getting into her dr. They may just have you catch a sample and drop it off.
I also have a monitor and many times have had the same thoughts as you - so your not alone - it’s normal to want to just sleep and have someone else take over monitor duty.
I know a lot of people have talked about certain nighttime tea and or melatonin for sleeping. Maybe some can offer up the brands they like - but I would check for a UTI first as my mom has many strange behaviors and agitation when she has a UTI and she does not have any of the other symptoms - no burning - no fever etc. we are treating one right now 🙏🏼🤞🏼.
wishing you a good night sleep tonight 😊