Hi everyone,
My MIL has Parkinson’s (maybe a-typical which progresses quicker, we will have a better idea in January). She moved in with my husband and I in September. She has care during the day and we typically cover at night.
Since she has been here and since her physical symptoms have began to decline (ex: needs help getting in and out of bed), she has began to call my husband at night from anywhere between 3 to 6 am, mostly to help her get out of bed as she sleeps super early (5-7 pm). He will always check on her but doesn’t help her up until her aid comes at 7 am (she’s a fall risk and no one is able to watch her that early).
He’s explained to her a few times to please call only if there’s an emergency, but she doesn’t appear to care or understand or maybe have patience. I’m not sure. She will call sometimes 30-40 times. This even happens during the day if she needs anything but at night time is when it’s incredibly disruptive. She’s gone as far as calling other family members if she can’t get a hold of either of us. The reasons can vary, sometimes it’ll be to adjust her , or wanting to watch tv, etc.
It has started to make me worry about my husbands mental health as he’s getting up every night for her and then has work in the morning. At the same time, in the small chance there is an emergency, we can’t just ignore her calls.
Has anyone dealt with anything like this? Also, is her inability to be patient or rational regarding the time a sign of cognitive decline?
You are a newly wed expecting a baby .
MIL will need to be placed in a facility . Caring for MIL at home will not be sustainable especially with a baby to care for too .
Good Luck .
I am glad you are re-assessing the situation.
Care at home is a worthy aim. Adding *as long as possible* is wise. Assessing when Possible turns to No Longer Possible is a big decision, hard to make, often heart-breaking. It will be different for each family & each situation.
I wish you strength & peace for this road.
She needs to be in a facility where professionals can care for her 24/7. ASAP. I’m so sorry, but this result became foreordained when you chose to take care of her in your home. I wish you luck in finding her just the right place.
You think your husband doesn't get enough sleep now? Haha. Neither of you will. Especially when her calls wake the baby up. How will you handle nights of no sleep, and then having to keep going 24 hours straight or more to tend to MIL? There will be no napping while the baby naps if she is awake or calling nonstop.
When that kid starts crawling and toddling, it will get even harder. And dangerous. How will you keep MIL's meds and such out of a toddler's reach?
Whatever schedule or routine you have with MIL right now will be out the window.
Your MIL will not like being second fiddle to a baby. You said she is not patient or rational. She won't care that the baby needs you more. She already doesn't care that she wakes you both up all night. She's very needy! She calls because she needs the reassurance her son is nearby. She will keep declining and needs will increase. You can't raise a baby in this chaos. You can't parent a baby when you're both so tired you can barely function.
You may think it’s the most loving thing to keep her at home, but it actually it’s not. There is no way on earth you can care for baby and MIL without running yourself into the ground fast. And all three of you will suffer for it.
You may think love will sustain caring for a baby and the MIL. It doesn’t. It can't.
She will not get the 24/7 care she needs (and if she doesn’t need it now, she soon will) in your home. Not because you’re bad people, but because it is not physically nor mentally possible.
There are good facilities out there. Shop around. It’s not an easy thing to do, but is the best thing for all involved. This baby is going to hit your world like a fireball and there is little one can do to prep for it.
Makes zero sense to me.
Put the TV on for her on a timer, take the phone away at night.
You two are going to be in a heap of trouble if you do not get a handle on her.
What about placing her in a facility? 24/7 care there.
You two are too young to be strapped with her 24/7, your life will be a living Hail if you do not make some hard decisions right now.
She could live a looonnnggg time my mother is 98, 99 in February.
If it is calling on the phone then yeah, take the phone away!
Since she seems to not "need" anything
I think the calling out is just her way to make sure she is not alone.
Could you turn on music or TV so she has something to listen to or watch until it is time to get up?
Maybe a "sound machine" that has crickets or other calming noises. (mine has 4 or 5 sounds, I can listen to it rain or the ocean, I can not listen to a "babbling brook without having to get up to go to the bathroom...heck I do that anyway)
And if at all possible try to ignore the calls.
Earplugs or sound cancelling headphones.
If it makes it feel safer putting in a baby monitor so that you can see that she is alright.
Her not grasping the time of day, not understanding that she can not call out at night is all part of her decline. It may also her wanting to be reassured that she is safe and that her son is close by.
My husband has Parkinson’s disease probably for 10 years, diagnosed in 2015, but GP noticed changes before.
It progresses slowly, until 2020 it was as if he did not have it at all.
Now it is still progressing fairly slowly although more changes are visible as far as mobility goes.
Changes in timing of medications (on time all the time) increase motion as well as levodopa CR nightly, which with slow release helps his flexibility.
He gets up once or twice at night with no help, goes to bed 10 -11.
My question is why would MIL go to bed at 5-7, not many people can sleep that long or even stay in bed for 10-12 hours.
Perhaps she needs more activities to keep her busy until 8-9 so all of you have better chance of sleeping.
My husband has regular quarterly appointments with neurologist and they check everything especially range of motion, some are long 1-2 hours appointments.
And adjustments to meds, once it was suggested melatonin as sleeping aide. So far he does not need more meds.
He exercises and has reg PT ( IMO the most important)
Your MIL’s PD, if it progresses fast could be something entirely different.
Of course, the most frustrating part is how little is known about this disease, it is believed Parkinson disease will double in next few decades, but for 60 years levodopa remains the only effective treatment.
And every neurologist says the same, every patient with PD is different and unique as we all are.
It sounds like it’s time for some decisions.
In the meantime, either hire night help or tell the relatives that you both physically cannot be her slave and for them to not be a flying monkey doing her bidding.
What an awful predicament for this couple to be in. I could never have cared for my mom when I was pregnant. I was on bedrest with a high risk pregnancy.
I don’t know the age of your mom or how she came to live with you. My mom came to live with us because she lost her home in hurricane Katrina.
I had no idea how devastating Parkinson’s disease or dementia was and how much it affects everyone in the family. I failed to look ahead.
I wanted to comfort my mother so much after losing her home that I felt that I had to provide a home for her forever. Our entire city was in shambles which caused everyone to be in shock for quite a while.
I wish that I had known how to prepare myself for what was to come.
I would have researched Parkinson’s disease further. It was a case of not knowing what I didn’t know. I learned everything the hard way!
Little did I know how much my mother hated being a burden on us. She later told me that she prayed for a way for her to be cared for without being a burden on her family. So, looking back I feel that I conditioned her to become dependent upon us.
Your mother in law may be open to being placed in a facility but even if she isn’t willing to go it may become necessary.
Going to a facility can be frightening for a person to come to come to terms with. I do think that caregivers should allow a person to process the information and allow them to ask questions.
Nothing about caregiving or being the person in need of care is easy. It’s a challenging time for everyone.
I saw relief with my mother when she went to her end of life facility. She received excellent care. I think she would have adapted to a facility much sooner.
Family members can remain close to their parents. They are able to serve them well by being a strong advocate for them while they are cared for by a professional staff in a facility.
I wonder if it would have been harder for me than it would have been for her because I was completely lost about what to do.
I knew that I was miserable when I grew exhausted. I allowed my emotions to rule my actions instead of being logical.
No matter how much we care about a person’s well being or how much we love them, sometimes we have to let go. It’s best for them and for us.
I thought when you said she "calls" 30-40 times meant she calls out for someone in the home to come help her? Or has a phone and calls from inside the house for your DH? This will wear you both out quickly, mentally and physically. If she has care during the day, she should be sleeping at night. Nobody likes wake up calls in the middle of the night!
Sounds like she's bothering her family every night, after getting waited on all day. I'd take away her phone, since she can call out for a real emergency inside the house. If DH didn't get through to her to stop, she is clearly declining and going to get worse.
You need to have peace and quiet as newlyweds, especially with a baby coming. This is very unfair to your new family, who should come first.
Time to consider MIL needs to be placed, before the baby comes. Once she moves in, it's hard to get her out. It's been a few months and you are already stressed, so the situation must change before the baby comes.
Good luck!
A few years ago we bought a cheap bedside digital clock that has an option to shine the time on the ceiling as well as to display it bedside. A gimmick, but we found we really like it. Both of us can easily see the time, and waiting for the minutes to change is a bit hypnotic if you are lying awake.
One like this would at least tell M what the time is. Perhaps you could find something that would display a movie of some sort on the ceiling, to keep her better occupied. For about $20, the clock was well worth the money.
She doesn't care that she is causing him issues because she is just trying to survive but, it can NOT happen at others expense.
People on Forum have tried to find answers to this forever, including sleep meds (with all their risks, medical marijuana, and etc. I have yet for someone to tell us they have the answer but I hope this thread will prove me wrong.
I think you and your husband need to have a serious talk now about how long you can do in home caregiving. I am so sorry. Only you can make these decisions for yourself, and you clearly understand the risk here. This is so very difficult. And this will only become much worse. I think I can assure you that no one calls this frequently understanding just what they are doing; MIL is failing. And this is progressive.
As you know, Parkinson’s disease is progressive and there is no cure for it. This situation will continue to get worse.
My mom did get dementia later in her life. Not all Parkinson’s patients will get dementia but please be aware that some do.
My mom started on Ativan and Seroquel. She was able to sleep after taking these meds. Please speak with her neurologist and see if meds will help.
Have you considered looking into placement in a facility?
Sending many hugs your way.
Best of luck.
And it does sound like your MIL is showing signs of some dementia. Lewy Body dementia often goes hand in hand with Parkinson's. I would talk to her doctor about that when she goes in January.
And it may also get to the point where you're just going to have to take her phone away and only give it to her during certain waking hours of the day.
There is nothing easy about dealing with someone with dementia, so start planning now for your plan B.
Best wishes.