My MIL (91) has Alzheimer’s. She moved in with us this year (my husband and I both retired December 31st - yes, we really messed up our retirement within three weeks of starting it). We did it for all the “right” reasons. On top of that, we have the moral high-ground over other family members who refused to take her - yeah, ask me how that’s working out for us! It’s not that I don’t love my MIL - there are times when she is a sweetheart, but there are times when I am seriously doubting my own sanity. She pee’d all over the house in the first two weeks she was here (yes, we use incontinence pads, she lowers them to pee on the floor then pulls them back up). Solution, we got a motion sensor. Great, no more “accidents” but now, I am up four (minimum) times a night with her wandering around and needing the toilet. I’m working on an average of 2-hrs sleep a night for the past eight weeks. That is an indicator of where I am emotionally, but it isn’t the problem. She treats me (actually is convinced) that this is a nursing home and I am staff. She orders me around with a very disrespectful and nasty tone. She is convinced my husband is hers (no matter how many times we try to convince her otherwise) and thinks I am the hired help trying to steal her man. It was mildly amusing to start with - we didn’t really think she believed that, but as time has gone by, it is becoming downright creepy. My husband doesn’t want to be left in the room with his mother because she gets very inappropriate.
Add to that the belligerent attitude, the constant (CONSTANT) complaining and the way she expects me to jump when she says so - it’s making me crazy. We humour her every whim - my husband won’t ever push back, I try but she tells me she’ll report me to my supervisor if I don’t do what she wants. It is the hardest thing I have ever had to do, and there is no end in sight - this has to be the healthiest 91-yr old in history - apart, of course, from the disease slowly eating her brain. I feel like it’s eating mine too. And it is blowing our once happy home apart. My husband and I snip and gripe at each other all day long. I never thought we would be here so soon into caring for her. I don’t think anyone can tell me it will improve, but lie to me please - I need some hope.
On a practical point there are specialized clothing that does up in the back that she can't get out of without assistance - they are 1 piece jump suits - I got some different stuff for my mom at 'SILVERT.COM' but saw a lady at her NH that wore them so that she wouldn't undress - if you can't find what you want there try the internet -
Also get child's monitors & an alarm that will go off when she opens her door - good luck
There are groups that will send volunteers to sit with her and give you a break.
I love how people throw out the "Just stick them in a home." answer... For some people it's not that simple and those people have their reasons for doing what they're doing when it really comes time and a doctor highly recommends it then I'd consider it until then maybe show a bit more support and a bit less of the insensitivity.
SJLSJL - Do whats right in your heart, keep in touch with your MIL's doctor or doctor's and get their opinions and listen to the options they suggest, it's not easy.
Depending on the state you reside there are a few that have Caregiver Aid and Acts to help you in this situation your local Senior Affairs office should be able to help with all the paperwork, speak with a healthcare worker (Nurse or Doctor) and they should be able to point you in the right direction.
I personally didn't know anything about a Caregiver Aid until I started poking around and placing phone calls.
In FL it's called "SHINE" or Senior Connections Center they'll help you as much as they can, I believe most states have something similar so start with that.
However, regardless of how committed you are to taking care of those you love, it will take more than two people to meet all of the needs, particularly if care is required 24/7. Unfortunately, caregivers who are over 60 may suffer stress and exhaustion from trying to "do it all," such that they may become ill or injured in the process.
You need balance and you need it now. I'm not sure if funds are at stake that you're trying to preserve for later use or if the opposite problem of lack of funding exists. It also sounds as if you are good, principled people who consistently try to do the right thing but are now in over your heads. It's easy to begin to drown without realizing that it's happening.
Find out how much money you have to work with and determine what you can and cannot physically do on a daily basis. Meet with an elder care attorney, an accountant if necessary, and a geriatric internal medicine physician to discuss possibilities which can range from having someone come into the home, engaging respite care away from home either in memory care or adult day care centers, and moving her into memory care altogether. And although hospice might not accept her, they might, so it can't hurt to have an evaluation. They can help with equipment, supplies, medicines related to the illness, bathing, regular checkups and intermittent babysitting in the home for a couple of hours at a time.
It's important to be honest with yourselves, the rest of the family and the geriatric internal medicine physician regarding your hopes and your limitations. The worst that can happen is for either you or your husband to become incapacitated and for all of you to go down together with the ship.
You're not alone, but each of us is unique to our own situation. Be as loving and principled as you can be to yourselves as well as to your mother in law, make the best decision you can for the moment (remember, things change), work hard to meet those obligations while continually evaluating the reality of the situation, and afford yourself the same understanding that you give to others.
Bless you.
I can relate to your situation. I quit my job in 2014 because my husband and I wanted to travel prior to relocating my mother to the state we live in, because it was evident that she was suffering from a cognitive impairment. Those plans were short lived because she came to our state for a relatives funeral 1 week before my final day of work and she became ill during that visit and required a 4 day hospital stay. I realized that she no longer needed to live alone and she had to be relocated immediately. We cared for my mother in our home for 4 years until she became angry, aggressive, incontinence (bladder and fecal) delusional, hallucinating, wandering and very uncooperative (medication helped some but not enough). I finally realized that I could no longer care for her and I placed her in assisted living memory care August 2018. My mother is still struggling with the behaviors of dementia but I know that I made the best decision for all involved because I could not have continued to be sleep deprived and care for her appropriately. My mother and I were best friends before Alzheimer's/Dementia robbed her and prior to placing her I really didn't want to be in the same room with her. Ultimately you and your husband must make the best decision for you and your family.
My Mama has Alzheimer's and mixed dementia. We muddled through for 7 years and I was pretty much a crazy lady. After listening to everyone here, as soon as she had a fall, off to the E.R. from there to rehab and my story is all crazy and on here lol! Now it is 2 1/2 years later and she is in a nice M.C. It took 3 trips to a geriatric psych. hospital and 1 change of MC units.
My life is still all about her but I have a life again with my husband. The MC is about 50 miles away but all we have is 2 little rest homes in our town. She walks fine with no walker. They keep her busy and washed and I still feel guilty. I also know it is the only way I would have survived. Please listen to these people because they have lived this too. Grace and Peace, Love Boots
I get it. Thanks for sharing. Dimentia, Alzheimer's, Parkinson's, Huntington's and other conditions that cause dysfunction and malfunction in the brain are so horrible. I believe that my mom knows how she's behaving sometimes because she's nasty and beligerant with me and nice to everyone else. When I lose patience and holler and curse at her, I feel so bad because it's not a way to treat my mother. I back off and pray before I do anything... You, your husband and me have strong self control. Let's try to keep exercising it and make it stronger 💪. 🤗😍😂😂 Hang in there...
Also, I am finally accepting the fact that I can't handle Mom at home anymore. She's too heavy for me to lift or move and she rebells everything I ask her to do. She doesn't want me to help her with anything.. The biggest saving grace for me is that she doesn't live in my house. Siblings and I moved her back to her house. Unlike you and your husband, when I leave I get to go home without her. She stayed with me at my house for a bit. Not planning to do that again. Next stop nursing home or full time care at her house. Of course everything costs so much. But, maybe other people can help Mom much better than me...🤓 To answer your question, yes I do feel like I am going insane. I am the one usually stuck at her house hours in and out. I hate it! I leave her house in the evening after she's gone to sleep. I watch the monitor and pray that she stays on the bed and not fall on the floor. Additionally, I try to create breaks and time away for myself where I don't depend on my siblings for coverage. Although they participate and I am grateful, they clearly operate on their own time. Anyway.... See if you and hubby can create time away from the house even if only for a few moments or hour...💖
MIL can't make the decision and it sounds like your husband is removing himself from it. Have him tell his family that mom's needs much more care than you and he realized and that the current situation isn't sustainable. Period. Don't apologize, don't discuss, be calm. If they don't want mom to live in a community setting, they can take her into their homes.
Your MIL's condition will only get worse and, even at her age, she could live for a long time. If you don't protect yourself, she could outlive you.
Your marriage also will be suffering and appears to be doing so already.
There is no moral high ground to being a martyr. You must make tough and hard decisions to get the 24/7 care for the MIL so you can be a support to her without damaging your health and marriage. I am certain she wouldn't want that if she were not suffering from ALZ.
Please reconsider this arrangement. And get a copy of the book 36 Hours to see what you can learn from that book.
once my husband and sil did that with their mother, they became more comfortable. please take care of yourselves.
I was able to keep Dad at home, where her passed in 2018.. Mom presented differently w dementia..After becoming an increased fall risk, “hidden” falls, fractured ribs, masking other health problems, I knew I couldn’t give her the proper care at home..
She is with a nice memory care & actually told my brother she likes it there, knows her nurses, etc.. It may take several months for MIL to adjust, but her level of care, and you/husbands well-being & sanity, need to be priority..
Prayers & cyber-hugs to you, husband & MIL.🙏🏻🤗
Look at it from a different perspective, her being in a facility will provide her with a village of people to boss around, plus there are 3 shifts, so no one is being sleep deprived. She will have lots of room to roam around, lots of different faces to interact with. She will have a base schedule and wiggle room to be who she is now and who she evolves to be.
You can go visit and see that she has her needs met, any special treats and turn around and go home.
Facilities are equipped to deal with human bodies that no longer have sound minds. They have the staff and resources to give that person a reasonably decent existence. And quite frankly, that's all you can expect dealing with this damnable disease.
Alzheimer's robs a person of so very much, but we don't need to let it steal our lives prematurely. Love and care don't mean sacrificing your wellbeing.
Find a certified elder law attorney (www.nelf.org) will help you find one in your area, they can help ensure that dad isn't left destitute and impoverished by placing her in a facility that will give her the care she needs.
Perhaps now you can see why other family members said no, propping up some situations only cause greater harm when the bottom falls out, they were wise to step back.
You need adequate sleep and time with your husband. Even if you had all the expertise in the world in caring for your MIL, you still have physical and emotional needs that you can't meet while trying to provide what is essentially full-time care (unless you and your husband decided to split the day into shifts, which is not something any rational person would advise). You have provided care for 6 months, which is in itself a degree of success. (I'm not sure if I would have lasted 6 days!) It's time to make the change. I suppose it is possible it will get better someday (when her brain deteriorates enough that she isn't combative)--but only after an extended period in which it gets worse!
I assume your FIL is living by himself at this point? Is he aware of how it is going for you, and what does he have to say?
My hubby's grandmother lived with severe dementia for years. This was back in the '80s. For *years* she was kicking, spitting, punching, biting any caregiver who was not a family member. She was a behemoth of a woman, who did manual labor her whole life, and had the strength of a water buffalo. Agency caregivers lasted a day and refused to return; at least one private pay caregiver quit mid-shift. She needed to be medicated/sedated and I don't know why my inlaws chose to give her nothing. It was extremely difficult for my inlaws to manage the revolving door of caregivers while they worked full time and were raising their young boys.
You deserve your own life.
You are still in this early enough to make a plan to get her moved into a facility. Talk to a social worker. Work with the social worker to get your MIL the professional care she needs.
It doesn’t make the SLIGHTEST bit of difference what her “tone” is. She has dementia, and THAT is what you are hearing when she talks to you. Because of her brain illness, she is no longer responsible for her behavior.
As I continue to read your narrative I find wonderful comments about all you’ve learned since you began this work. Be proud of yourself for your honesty, your love for your husband and your life together, and your intelligence and increasing sophistication in dealing with a dementia victim.
In our situations we found that the closer you are to her potential residential site, the easier it will be on you, and the better for her. If you can arrange short frequent “drop-in”visits, great!
Deal head on with flashes of guilt, because you’ll have them. If you’ve done as well in the future as you’ve done in the past, “guilt” is NOT AN OPTION!
sterner stuff - stuff. If you feel you need to beat yourselves up about it. Stop. If you are worried about what other will say. Who cares
you two had your minds set and ready to go with a different future. Retirement. Yeh!!!
keep on track with that and place MIL in permanent care. That way you will have your life and be better at looking after her AND the FIL. Bless his cotton socks. 95 and trying to do it. 95!! How come nobody caught up with that fact before?
if nothing else has come out of this light bulb 💡 moment then at least your FIL has been rejuvenated
Hugs.
Not knowing everything about advanced Alzheimer's Disease and not having had the training and experience needed to care for somebody who has it is not a moral failing.
You took your MIL in to ensure that she had the care she needed. You have made a good start and her condition has recovered well. From here, she needs more than you and your husband can provide, no matter how hard you try. Remind yourselves sternly that the sole aim is to give her the care she needs; and surrender any unreasonable and counterproductive expectations you may still have of yourselves.