My mother has Alzheimer’s and moved in with me and my husband December 2018. My father had just passed away so my siblings said since I took early retirement after 38 years at a company, I should take mom in. I do get some help from 2 siblings and the neighbor.
I cannot seem to turn my brain off to sleep at night and I am exhausted. We did install wireless doorbell alarms on her bedroom door and the backdoor.
Mom never gets out of bed until I go in her bedroom and get her up. Most times I need to wake her up and it’s between 9:30-10:00 am...she is still sleeping.
I need to sleep...any suggestions for me to get a good sound night sleep?
When I read how your siblings nominated you as Mom's care giver, I thought "how nice" and wondered if you really agreed, especially with those young grandchildren, or got guilted into it. Unfortunately, ALZ is a disease where the road only goes downhill with the care demands significantly increasing. Eventually almost every ALZ patient reaches a point of needing 24/7 care and support almost no single person can provide, even with "some" help. At some point, dementia patients become unpredictable and even dangerous, to themselves and others, without a controlled environment and constant supervision.
Perhaps one reason you are having problems sleeping is some resentment over having your life, retirement, and enjoyment of your grandchildren disrupted. If that's the case then I encourage you to consider finding a placement for your mother, in a continuing care facility if possible. If your mother only needs AL at this point and is still functioning you can visit often and maybe take her out for lunch. As the disease progresses, Mom will be less able to cope with trips and need to stay at the facility. When you have some acceptable facilities in mind, you can have a family meeting and discuss the options with your younger siblings.
I believe no child has a duty to provide direct care for their parent; they do have a duty to be an advocate for a parent with diminishing capacity. Your parents had a life and you deserve to have one too. I say this as a person who supported by mother for over 20 years as she cared for my father with vascular dementia; petitioned for guardianship of my father when my mother's health began failing and placed him in an MC, and took my mother with MCI and mobility challenges into my home where she still resides. I completely understand wanting to make sure your mother has good care, but you also need to consider the impact you want and need to have in the lives of your husband, children, and grandchildren; they need you too.
Have a conversation with your siblings and tell them what’s going on with you. They’re going to have to step up and offer more than “some help”. They may need to come stay with Mom while you have a getaway weekend. Or, take Mom to their homes for respite. If Mom has dementia, things will not get better, only worse.
My mother died four days ago and I was so strung out and over-exhausted that I simply couldn't relax enough to sleep, and had a rapid heartbeat as well which worried me as I couldn't slow it (all due to stress). I finally started playing one of his recordings, and next thing I knew it was seven hours later and I was waking up feeling a LOT better, with a normal heart rate. I can thoroughly recommend this as a quick way to relax and refresh yourself.
I can't even imagine that your siblings made the decision and you agreed. I would say that you were grieving and not able to really understand what you were doing. Now that the 1st year has passed and emotions are not so raw, it is time to look at the situation.
It has been a year, how much help are your siblings providing for their mom?
They need to step up and take their fair share, like taking mom on their weekends and rotating between themselves so you get 2 days a week minimum for your life or you all need to find a place that mom can receive professional care. I think that with 6 of you, there are plenty of eyes to ensure that she is receiving good care. She will also have peers around her that she can talk to and do activities with. My dad was popular because I brought homemade goodies in that he could share. Great ice breaker for making new friends.
I bet being the oldest you did your share of assisting them as a mini mom growing up and they take you for granted now, they see you in that role. Now you are in that role and it is too much for 1 person to do. And it is unfair that they are placing all the responsibility on you.
Your body is obviously telling you that it is to much, please listen. Statistically 40% of caregivers die before the person that they are caring for. Would your healthy mom put you in a position that you have such high odds of dying because you care for her? I don't personally believe that any loving person would put you in that position. The spirit is willing but the body is weak. Time to ensure that you get to watch your grandbabies grow up, your mom got that.
Best of luck dealing with your siblings, don't let them push you into keeping things status quo.
I hate to say it but it seems they've talked their way out of the responsibility of taking care of Mom; which is a crying shame!
It seems; to me at least; they've seemed to coerce you; probably thru a guilt trip of their own about how they're way too busy and such. A load of crap since you've retired and have Earned some time to relax...plain & simple.
If you cannot turn off your brain, it's obvious they need to take a more hands on approach to caring for Mom on a Daily basis. trust me I was there 5 years ago and I'm still doing it because they Won't. BTW, I'm only 53 and still work 5 12hr days at the rail yard on swing-shift (6pm-6am). I finnaly have some help; 9am-1pm 4 days a week, from a P.D.N., so I can Try to sleep but even that's hit or miss.
You need to be blunt with your 2 siblings about them taking 1/3 of the responsibility each in caring for Mom or have them pay 1/3 each for a P.D.N. or caregiver to come to Your house and give you some time to enjoy your retirement.
I know I'm coming off a bit harsh but 2 months ago; after more than a year of having to go to work with 2 hours sleep every 2-3 days; I Had to start seeing a psychologist weekly for 3 hours to try to get my head screwed back on straight and get my BP down from a scary 153/95 to 141/86 (so far it seems to be dropping every week) and costs me $300/mo.
Don't end up like me, feeling 10 years older than you are and despising your siblings.
Has she reached a point where you may have to change her at night?
Have you tried..
White noise machine, personally I don't like the white noise but I do like the sounds of a spring night with frogs and crickets and once in a while the thunderstorm is nice (cat hates it though)
Melatonin. Should help you sleep it in natural and will not have you wake with a foggy head like the "nitetime" sleep stuff does. Anything like Benedryl gives me foggy brain.
Start turning off all your electronics an hour before you want to go to sleep. Reading..a book that thing made with paper that you hold in your hand...and a bedside light if you need to do something then start to relax.
Lastly..if you are exhausted, stressed maybe this is something to talk to your doctor about. If you try all the suggestions that have been given there is noting wrong about talking to someone about what is going on and do not discount the possibility of medication to help you. This is a stressful job not to mention that you are a "child" watching her mom decline, watching her slowly die, and there is nothing you can do about it. No matter how good of a job you do.
You didn't take early retirement so that you could become a 24/7 caregiver to a lady with Alzheimer's disease. And that is also not the retirement your husband is looking forward to.
You say in your profile and repeat in your post that your siblings said that you should take your mother in. When did your siblings come to be in control of your and your husband's decisions?
Do the two of YOU want to be your mother's primary caregiver?
Retirement after nearly 40 years' service and the loss of your father are also two major life events which you have had no opportunity to adjust to, because of being ambushed by caregiving. I'm sure that stress is the obvious culprit in your inability to relax and sleep, but I think these two big factors should be taken into account as well.
What other possible arrangements would YOU consider for your mother's care? - I stress the you, because there's no point making a proposal to your family if you're not happy with it yourself.
I talked with a dementia doc about my insomnia and he said never take a med that shuts your brain down. He said exercise and read until you finally sleep. Just to give you some history here...we believe my moms dementia is caused by years and years of taking Benadryl and other "bad meds". My mom had horrible allergies. Many of the over the counter drugs she took are now linked to dementia. So I guess that's my biggest advice is to not take a pill to sleep.
The OP is most likely too exhausted to exercise. I agree it is wonderful to exercise but sometimes it’s an effort to just to put one foot in front of the other.
It’s hard not to just get up and run an errand, go to lunch with friends...I need to find a sitter for mom for everything time I leave the house or bring her with me.
Again, thank you! May you have a blessed Christmas.
Tell your mom and siblings that this arrangement is not working out for anyone.
I hope that you find the right solution for your family. Best wishes.
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