I can't "watch" mom 16 hours a day anymore. What can I do?


Today is the 1 month anniversary of Mom coming to live with us. (she's 94, stage 6-7 Alzheimer's). She's completely confused and is still trying to adapt to our home. Fortunately, my husband works from home and helps me tremendously. I have gone back to work 2 days a week to supplement our income and to "escape". The memory care facility she was in did not watch her carefully and she has fallen multiple times. (once broke her wrist, other times with multiple severe bruises). She also can't sit down or get up from the toilet, so she would pull down her diaper and urinate in the corners of rooms. That tells me that they didn't offer to take her to the toilet often enough. We go to the bathroom 7-10 times in a 24 hour period (no UTI). She's unsteady but can walk with assistance and a walker. I'm paranoid that she will fall in my home, so I watch her like a hawk. When I'm washing dishes I have my back to her. (We have a long kitchen, dining and living room set-up.) I turn around every minute to make sure she hasn't gotten up. I walked into my bedroom the other day for 3 minutes and she (miraculously) got up from the sofa and walked, on her own (without the walker), into the bathroom (which she can't find half the time). Unfortunately, she couldn't navigate the toilet seat so she just pulled down her diaper and peed on the floor. I was frantic when I came out of the bedroom because she wasn't on the couch where I left her. The surge of adrenaline could have shot me to the moon! I frantically checked her room, then found her standing in her own tinkle in the bathroom. I don't so much care about the cleanup but I'm terrified she'll fall. We hired a caregiver 4 nights a week to be in her room so she's always has a pair of eyes on her. (Baby monitor was useless.) Hubby and I take turns sleeping in her room when our angel (caregiver) isn't working. During the day, I'm forever calling my husband to come into the living room to watch her so I can take a shower, take out the garbage, put laundry away, or just pet my dogs outside. Except for trips to the grocery store and work, I haven't seen the light of day. Hubby has offered multiple times for me to go out. I've gone once or twice. I trust him in her care. Yesterday, I had a meltdown. I sat on my bed and cried. (hubby was in the living room with her.) I had to take an Ativan to calm down. (I can't tolerate the effects of antidepressants on my heart.) I feel like it would be my fault if she fell and broke something. She has osteoporosis and I understand that her bones can break at anytime and she can fall because they've broken and it wouldn't be my fault. I feel tied to the living room where she sits during the day. I once took a shower when my hubs was gone 'cause I felt so cruddy but got out of the shower twice just to check on her (she was sleeping). We can't afford more caregivers for the day shift and her SS is barely covering her costs here (diapers, wipes, feminine pads, bibs, onsies, chux (bed and sofa pads), extra food, meds, laundry products, etc.) If hubby isn't home and I need to leave the room for a bit, what do I do?

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My bonus daughter was at our house taking care of her father. They were in the bathroom together. He fell into the dry bathtub and hit is head on the wall. She helped him out and he was fine. When I got home she was extremely anxious that her dad had fallen on her watch and she was feeling guilty. I assured her that it wasn't her fault. That his disease made him highly susceptible to falling. I was so grateful that she was there to help him and determine there was no damage. What if he'd been alone while I was running errands? He might still be in the tub. Or he might have injured himself trying to get out. She was doing a fine job, and it wasn't her fault that he fell.

Husband fell once in a hospital room with a nurse and me standing not 3 feet from him! He fell once using his walker with me beside him. I was able to break his fall, but not to prevent it.

My mother's hip broke and she fell in the NH. It happened it that order, and it would have happened anywhere, no matter who was watching her. Someone might have been able to break her fall and ease her to the floor, but no one could have prevented the break or the fall.

I guess what I am saying, SueC, is that you won't survive caring for Mom if you don't accept that there are certain risks inherent in her condition. She may fall. She may choke on food. She may touch a hot stove. You cannot completely remove all risks from her world, even by keeping a careful eye on her at all times. Having her in your home may significantly reduce her risks compared to being in a memory care center. Or maybe not. They do have some advantages on their side.

Caring for someone with mid-to-late dementia is not a one-person job. You are very fortunate to share this role with a supportive husband. It may come to a point where that won't be enough. Then you will either have to hire additional help or place her back in a facility.

Think back on the care center she was in. Knowing what you know now about her needs, and realizing the costs (high as they are) do not cover one-on-one round-the-clock care, how do you think they did? Other than the falls, how was the care? Was her weight stable? Was she usually happy (or at least not angry) when you visited her? She didn't have bed sores or diaper rash? She interacted with staff and/or other residents? She participated in at least some activities, or watched them? Look at the whole picture and evaluate the experience. If it really comes up short, then find a better facility if she needs one in the future.

And try to relax, at least a little! Part of the benefit of being in your home is that you both can share some joy. Don't let anxiety get in your way.
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Would she qualify for hospice? My mom is stage 7 and on hospice. One of the nice things is they provide the meds, chux, briefs (diapers), soaps, ointments, etc. They also send a CNA to bath her twice a week and a nurse once a week. They don't give me a break but I can go pee alone when they are here ;-). Maybe that would free up some funds for you to hire more help...worth a try!

I feel your pain...my mom requires constant care too. I too have an amazing husband that helps out. Mom often likes him better than me ;-). Our daughters give up breaks too. My mom has been on hospice for 7 months. It is not as much help as I thought it would be, but finances are not tight for my mom... She has an excellent retirement. If finances were tight, the items they supply would make the difference.
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Falls are inevitable whether the person is cared for at home or in a facility, even if it's a unit specifically designed for dementia persons. Falls can be inevitable for me, you, or independently living persons and even with the button "help! I've fallen and I can't get up!" can suffer an injury. Those buttons don't PREVENT falls, they offer assistance after the fact (when injury may already have happened). So what can you do?

Be as vigilant as possible, key words there being "as possible". I've seen multiple caregivers in a professional setting try to prevent an unsteady person during a combative episode and the person fell. Falls happen.

You are loving. You are loved.
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Thanks everyone. Great suggestions and I can feel your caring.

I need to lighten up. Being a nurse, it always was a reflection of our care if a patient had a fall or accident on our shift. I guess this is a hold over with my mother. What would people think if she fell? Yeah, you guys are right, they probably would understand.

She IS an accident waiting to happen. I guess I'm waiting for the bomb to drop and becoming a nervous wreck in the mean time.

The problem with hospice and day care is that we live in Tijuana, Mexico. Unfortunately those services don't come across the border. I work in California, so if she was in a facility there I could visit her after work. I need to check out Medicaid to see if she qualifies.

I just don't want her to hurt herself but I guess I can't protect her every minute. I hate to say this but it will be easier when she's bedridden. At least I will know that she won't be falling.
Thanks to all. I feel better. Big hugs
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Oh, my. It made me tired just reading all that you are going through. I can understand why she fell sometimes at the facility, since there was no one who could watch her every minute. I was thinking that it would be nice if she could be in a facility with a paid caregiver there with her all the time. I started to think of the expense of such an arrangement. In facilities they have alarms that let them know when someone gets up. I heard one of them go off when I was in a NH visiting someone. The shortcoming I saw of the alarm was that the patient could already have fallen by the time someone got to her. Maybe they should make an alarm that says "sit back down." I wonder if that might work -- just imaging here.

Often there are no good answers when it comes to advanced dementia. We do the best we can. Do you have home health, e.g. hospice, coming in? Many of them have respite opportunities which could be very nice for you. I wish I had a really good solution, but all I have is a lot of empathy and understanding what you're going through. It is exhausting.
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Do you think she could do daycare? Some hospitals have daycare programs for people with Alzheimer's. If you think it may work, that would be great. It would let you save money for caregivers to help in your home during other times.
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It sounds like you are in a damned if you do damned if you don't. Maybe you should look into an elderly group home for your mom. There would be less residents and more one on one care from a nurse. How much does your mom get with Social Security? She still might need Medicaid.
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Ahh Sue
I've seen more folks at mom's memory care fall even with bed and wheelchair alarms - no one hears it going off and the alarm means nothing to the person it is attached - even tonight a resident slid off her bed and was yelling for help as I walked by

My mom has had at least 5 falls there resulting in one trip to the ER and one badly sprained ankle which landed her in a wheelchair - but even in the wheelchair she fell when they gave her a shower or got her out of bed

Do you know that in later stages, folks - not my mom yet- lean so far forward in their wheelchair that they fall out and hit their heads on tables ?

Over the years, mom had probably a dozen falls, long before dementia and some with me nearby and it worried me all the time

Your mom may indeed do well in a smaller board and care but Medicaid might not cover the expenses - as hard as it may be, she may need to go a nursing home where you can visit without adding so much stress to you

God bless
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We had a neighbor who had osteoporosis. One day she went to her refrigerator, opened the door and broke several bones. It was as if they just crumbled on her. She was moved several times, finally winding up in a NH near one of her daughters. She was in severe pain at one point with the broken bones. I only mention this to say that one with osteoporosis can break a bone without effort. If it happens it probably wont be because you weren't watching. Nor will it be prevented by your watching. It might make you feel better to be there immediately when it happens but probably wont make that much difference to her. I encourage you to get therapy. I'm so glad you have a wonderful husband to help. Try not to worry about "accidents". They are going to happen. Remove precious objects as you would for a toddler. Understand that this is for a time and this time will pass. What to do if you need to leave the room is know that you aren't in control. Mom's destiny is her own and whatever bone she breaks was basically lying in wait, you just can't see it in advance. Perhaps you could diary the events of the day and keep a tally of what is going on. If it feels like there is a disaster daily and actually it is only twice a week you will feel better to see the truth of the matter. Try to get a bedside commode seat to go over her toilet. It is taller than a regular toilet and allows her a higher more comfortable seat.
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Yes, mom and I are US citizens. My husband is a Mexican citizen.
I had her in a good facility in Rosarito, Mexico (next town over from us) because she couldn't afford any care in California. She gets $1800./month from SS but even the board and care places in California start at $3500./mo.

I will have to check into Medi-Cal (California's Medicaid) to see if she qualifies, just in case this gets to be too much.

I have POA and she has a will with me (her only child) to inherit everything (essentially there is nothing.)
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