Why do my mother's worst problems seem to only begin at night? 2-3 am is usually my final wake up call, but I am up all through the night.
I am 67 myself, disabled with degenerative disc disease as she is. at times she is dead weight to get her on her bedside toilet. I have started finding her only when she has stripped off her diaper and the bed is soaked and/or soiled. Other times she calls me, but sometimes she doesn't remember I am there to help, so she tries to get up despite being in a hospital bed with the rails up.
I can never leave her alone and hospice is limited in when they can be here for us. I/we have some money, but it would soon be gone paying the rates asked for caregivers to come enough to give me some relief. I WILL NOT send her to LTC.
Any advice? I'm at the end of my rope and she has very aggressive cancer, so it will only get worse.
We gave Mom 200-400 mg magnesium glycinate after dinner. This really helped her sleep through the night.
Be prepared for wet and/or soiled undergarments in the morning. A few things to try to help with this:
1 - Night time incontinence pull-up or diaper with a night time pad inside - to absorb maximum amount of urine.
2 - Pads on the bed to absorb liquid and solid wastes - effort to have less laundry from soiled bed linen.
3 - No food or drink 2 hours before bedtime.
4 - Use potty right before bedtime and encourage her to try to have a poop as well as empty her bladder.
5 - Make sure she is not drinking/eating caffeinated products in afternoon or evening.
Mom needs the help you simply cannot keep giving her. Do what is best for her!
If you are looking for a way to minimize or stop the overnight wake ups, and think you can continue providing her care if you could only get a good night's sleep, have you tried any medication to help get her sleep more regular?
My husband was agitated at nights and I found that Trazodone helped him to relax enough to sleep at night.
Do you think your mother could adapt to relying exclusively on incontinence products overnight, without even trying to get up to the bedside commode?
You can ask her doctor (or hospice) if a catheter is appropriate for her. Otherwise, good overnight diapers will work. Cover her bed with at least
2 disposable underpads. This makes it a lot easier, even if you do have to get up at night, to simply roll her on her side, roll up the soiled pad and dispose of it, leaving a clean dry pad under her.
If the second pad becomes wet or soiled, dispose of it the same way.
The real advice is, if you are at the end of your rope, and your physical and emotional health are deteriorating, spend the money to hire overnight care, or consider placement in a comfortable care facility. Your mother may feel more comfortable having 24 hour professional care at this stage in her life when she really needs it.
Have you ever been in a hospital for a procedure? Maybe an operation or to have a baby,... would you have rather been at home? Or to have nurses and aides checking on you regularly to make sure you are comfortable, bringing you something to eat and drink, and allowing you a morphine drip, and if needed, would quickly efficiently change a diaper, or help you to the toilet.
At the very least, try to get her accustomed to relying on incontinence briefs. If she is dead weight and you with your own physical limitations are trying to lift her onto a toilet seat - what if you both went down in the middle of the night? Who's going to get you up?!
Don't let this kill you both. I'm sorry you are struggling with the challenge, and you want to keep her at home. Just know that this battle will not last forever. She will succumb to her disease, and you will have to move on to a new phase of mourning. Try to find some bright moments together before that happens.
I am very sorry about your mother's situation. Your situation is no longer sustainable. She will have to be placed in long-term care facility, whether you like it or not, or your stress may kill you. Then what happens to your mom? Your own health and safety come first.
That's what long-term care is for, and you yourself may face it someday.
Please be advised that your mother's funds pay for her own care, and do not expect to inherit any money from her. If you mother's funds will soon run out, it's time to contact her county's area of aging counsel with a Medicaid expert for her financial assistance.
Because of that you are doomed to continue as you are until one or both of you dies.
I'm so sorry it's played out this way. Only you can change it.
She would be more comfortable and safer having 24/7 care in a hospice facility. There are two priorities here. One is that your mother needs the best care possible to keep her comfortable. The other priority is for you not to destroy your physical health.
Do what is best for both of you.
Hospice can provide you with equipment so that you are not "lifting dead weight."
Either a Sit to Stand or a Hoyer Lift.
Get a bed alarm so you know when she is trying to get out of bed.
There are "anti strip" clothing that she would wear so that it will make it more difficult for her to remove clothing.
I also think that you might have to rethink your "I WILL NOT send her to LTC"
What happens to either of you if you get hurt caring for her or you hurt her? Who will care for you or for both of you if that happens?
How would you feel if you did hurt her while trying to move her?
You might need a Respite. Ask the Nurse or Social Worker to arrange a Respite. This is covered since she is on Hospice. (great little known benefit of Hospice)
A Respite stay will give you a break, will give mom a break. They will care for her. Many Hospice have an In Patient Unit where they will bring a patient for Respite or for Pain and symptom management. Some will use a dedicated area of a hospital or other facility that they have an agreement with.
Please request a Respite
And when mom gets back home ask for a Volunteer to come 1 time a week. This will also give you a scheduled break. The Volunteer can come for about 3 to 4 hours. They can do no "hands on" care but they can keep mom company, fix a lunch (as long as mom can feed herself) but most important you can get away for a bit.
1 - Pad the bed with disposable pads (I like unscented dog pads since they are cheaper and larger).
2 - Put night time disposable diaper or pull-up on her with an extra night time pad to catch a lot urine of poop.
3 - Talk to her doctor about medications. She may need a change in her medications so she will poop mostly during the day. She may also benefit from medication to help her to sleep.
4 - Schedule her bathroom breaks so that she gets to use the potty every 2-3 hours during the day and right before you go to bed.
My sleep was in the day like his, and up a lot at night. Because it is an aggressive cancer, the amount of time left for your Mom is probably not very long. I would spend the money for someone to care for her while you sleep. Sleep is SO IMPORTANT for you!!! I agree with the diapers and bed pads. Save your back.
I am so sorry! These times are the hardest.
She is so blessed that you love her so much. Ask any friends or neighbors for help sometimes too. People will want to help out in your time of need. Hopefully
Believe it or not, they really are staff in long-term facilities who do love and care about their patients and want them to be safe and well. True, they may not love your parent as much as you, but they still care.
In OP’s case, they refuse to accept that caring for their mother is going to prove undoing for them both.
Hospice is covered by Medicare. In-home hospice will take 2 days to set up after she's been approved for it. In-home hospice doesn't relieve you of your caregiving duties and work. I just went through this with my Aunt this past January. I followed her wishes but for myself, I will not insist upon in-home hospice. Find a good, reputable hospice facility and tour it in advance. Go into this with your eyes wide open so that you can protect your own self for life after your Mom passes.
For the record, my MIL was in a fantastic, faith-based LTC facility for 7 years. She got excellent care there -- better than I could have ever given her at home, and it was not top dollar. It was 3 miles from our house. Are there bad awful facilities? Yes, but inbetween are many gems. Do research now so you don't have to do it in a crisis.
Sounds like the facility respite you recommended would be a good fit, since the poster said Hospice is limited in when they are available.
She might want to try a purewick system if the Mom is only fidgety when wet.
Good luck to you.
I know you are adamant you won't send your mom somewhere, but the situation as you describe it is not sustainable. She will only get worse and need more care, and you are already at wit's end.
How long until someone can get into the house to find you there? I’m not creating a fantasy scenario here. My sister, at your age and with exactly those same kind of back problems, ended up on her bedroom floor in the middle of the night when trying to get to the bathroom. She had insisted she could do it all alone, by herself, and wouldn’t let anyone help.
She almost died on that floor, spending three days lying there in misery, unable to get to a phone. A neighbor finally saw newspapers piling up and looked through a window to see her. She never walked again, and recently died through doing the same sort of “I can do it all alone without long term care!” Adults have the right to make their own choices, no matter how bad those choices are.
Reread Alva’s comment again carefully. She is correct.
You ask us why these problems are worse at night, but that's hardly the question here.
The question comes down to this:
"What can be done when very ill people are being cared for by someone who is herself ill and overwhelmed".
The answer comes down to money and the hiring of help.
And if there is no money, in all truth, when there is the pre-stipulation that LTC won't happen, there IS NO ANSWER AT ALL.
I am sorry to be so blunt, but this isn't sustainable. I think you understand that.
Your loved one is in need now of several shifts of several caregivers each shift.
I wish you the very best, and would love to have any answer that can help you. I hope others are more adequate to your question than I am.