I am concerned about my mother's toilet needs in the middle of the night. Advice?

I am in a similar situation. My mother their lives in a AL place that is considered "age in place" that is for dementia patients. It has been almost 3 years now and mom is now facing the what looks to be the end of her time. I have read and reread her advanced health directives that she had formally written 15 years ago I do believe that we are following her wishes. Moms health is greatly failing, side effects of new medication are horrible and the dr wants to change to a different medication which side effects are far worse. For me, I took a step back and considered quality of life for her not me. Knowing who she used to be, I know that she would silently suffer if I allow the Drs to give the new medication. I am trying my best to be sure that I will have know regrets as to how she was cared for in the AL and on this forum is where I get the best advice from those who have experienced what I am going through. The advice that people have given in regards to your question certainly looks like people are telling you not to move your mother home with you.

If she can afford to stay where she is, DEFinitely leave her there. You will not be able to care for her as well as 3 shifts and you can spend as much time with her as you want. You can even pick her up and bring her to your house for visits instead of hanging out in the AL place. I have been taking care of my mother and have kept her mobile by exercise and treadmill. After a fall, it took her a long time to come back and I had to get up w her at night for toileting. It was HORRENDOUS. It didn't last too long or I would have slashed my wrists! Not really. But we don't spend any quality time at all because she resents my telling her what to do and is passive aggressive. And I resent her for not cooperating and making my life more difficult. I'm too upset and angry a lot of the time to even want to have a conversation with her. Older people who are losing mobility and mental capacity are not really happy people to be around. I say, just visit when you want and have a good time and leave to go home to your own life. I have NONE, and I wish it were different, but I'm kinda stuck. You won't really be improving her life and will be ruining your own.

JudyAnn, I think that moving parents in with you is almost always a trial but that is best to go into it on that basis. People who are sure this is forever are sometimes devastated to discover their own limitations. Best to at it with the idea of doing your best and seeing what happens.

Do keep in touch. We'd love to be supportive through the ups and downs.

JudyAnn, we dont mean to make you feel you are making a bad decision, we just want you make an informed one. A trial is not a bad idea, things may be better for you, each case is different. Just have a backup plan so if its to much you can change things before you burn out. When mom moved to th Adult Family Home it was because we had been doing it for a long time on our own, it was time for a break. With you too, perhaps you can do it for awhile. Just know if you cannot there is no shame admitting it. I do hope you will stay in touch and let us know how things are going. Hugs to you all.

OMG- A 3 month trial??? NI, NO, NO! You are goung to need 3 weeks for mom to adjust- ROUTINE IS THEIR LIFE. If my moms KLEENEX tissues is moved an inch, shell wake me to say something is horribly wrong. You cannot change or move anything- routine must remain exact. I didnt see this "trial" thing. I think you need spend a lor more time reading these sites- peopke who dream of the day their parent dies- not meaning it of course but thats the level of desperation. Quality time? Seriously? If you consider bathing, wiping her after toilet bowel movements, manicure, pedicures, dumped food trays, spilled liquids, changing clothes, sheets etc as quality (to name very few) yes, thats the quality and personally, i do love helping mom but i am exhausted and i have NO FREE TIME for husband, dinners, dates, fruends, family- none and zero.

Btw-- dont ever count on them doing anything unassisted after they were in assisted living- keyword =ASSISTED. You become nurse, maid, cook; hand and foot and sometimes that means every 5 minutes. Letting someone who has been assisted toilet themselves at night on a portable toilet is asking for a fall. CAREgiving is SERIOUS, HARD, SLEEP AND FOOD DEPRIVED work. Ive lost 20 pounds in 4 months and nights of sleep. There is no room for impatience- you will have a child in an adult body.

I purchased a SMART pager online. Mom has a button necklace around her neck. I keep the pager on me 24/7. I also installed 2 VTECH baby monitors -- the cameras are portable so i watch mom 24/7 as that is on me too. The actual Cameras are mounted one in her bedroom and one in the living room. That way, i can do chores but always watching and listening. If she chooses to say my name; the monitor i carry picks up any change in sound-- cough, sneeze, something drops. She has a nighttime portable bedside toilet, a portable food service tray, and a toilet seat riser and hand bars where needed. Last, if you are concerned about sleep deprivatiin, mental and physical exhaustion -- dont bring her home. Its 10x worse than i imagined but just as rewarding ... now mom is on Hospice and soon, ill be cleaning her adult diaper. Shes getting too weak for toilets.

JudyAnn; Much good luck to you and let us know how it works out!

Yes, I am reading them. The answers were not encouraging so I have stopped defending my reasons and am just listening. My husband and I are going to go ahead and do a trial for 3 months. Thanks.

JudyAnn5530, are you still with us?

Bedside commode!

Much depends on a person's abilities/disabilities (and mental state)- I would be glad to offer suggestions if we can discuss the particular situation offline. I hate to see people risk injury when assistive products could help. JohnJoe's bedside commode use may be a huge help but many seniors may not be able to safely get to it without sturdy things to help them stand and maintain their balance. Imagine frail, sleepy, heavily medicated/lightheaded people getting out of a dead sleep (in the dark). Not a pretty picture.

Hi JudyAnn5530-My Mom has Al/s since 2013, and every once and a while the legs go, therefore Mother kneed's assistance helping Her to the Loo, which means I'm wrecked jaded tired next day. I got a commode for Mom and I positioned it next to Her bed so She's able to use it unassisted. Make Life as comfortable and easy for Yourself as We must be very careful not to get burn out.

Yes that would be great any ideas

I was thinking more along the lines of mobility problems- a person that can't even roll over by themselves (for comfort or reduce bedsore risk) needs lots of help. If they could independently reposition and safely exit the bed to a bedside commode it would make life easier for many people.

Yes for men a nightime cath can work well but for women its not that easy.

This is similar to many of the Parkinsons calls we get- often heavy husband and 110# wife. Husband can't roll over or get out of bed himself- Parkinsons very subject to UTIs so that makes the problem even worst. Wife waking up 5-10 times a night to help their husband- at 7 days a week who can do that forever? There are solutions to let both get a good day's sleep again. Husband can reposition for comfort (and reduce bedsore risk) and go to the bathroom as needed while wife can sleep thru the night. There are lots of products out in the world that can help but often people are struggling so bad on a daily basis they don't know where to look. Let me know if I can offer suggestions.

JudyAnn, I can tell you about our experience with my mom. She lived with me for 9 yrs during which time she could do most everything for herself. She then moved in with my sister. After a couple of falls and rehab she could no longer be unattended. We set up care for daytime, myself and niece but the nights fell on my sister. My mom would get up every two hours to go potty. It took only a short time before my sister could no longer handle this. She is 60 and works full time. The night time breaks in sleep took a hugh toll on her, even thought her husband would help out. Just knowing that at any moment you are going to be called for is enough to provoke anxiety and making it even harder to get to sleep. The constant wake sleep cycle finally made us decide it was best for mom to move into an Adult Family Home. Its a home with 6 residents and a wonderful family who give remarkable care. She is 10 minutes away for both of us and she loves it. She herself knew it was to much for my sister and is glad we made the move. Caring for someone in your home is very very hard. 24/7 is just that 24/7 so I suggest you give it a lot of thought and read what others are saying on this forum. I know you love your mom, but caring for her yourself may not be the best for all involved. Whatever choice you make I do wish you all the best. You have a kind heart. Hugs. 😃

Nature: Sorry for your loss and you spoke the touching truth!

I tried taking my loved one back home. I tried. It was not good for us. I felt like I was hurting her when I tried to suction her. She required too much nursing and I am not a nurse. Hell, I couldn't even keep the room sterilized enough for her suctioning and feeding tube and bedsores. It was just impossible. I tried. Within weeks of placing her back in a nicer nursing home she died. Probably due to their neglect. No one will ever watch over your loved one like you will. Both choices were impossible.

I also should have mentioned I sleep next door to her and use baby monitors. With the baby monitor in her room I am able to hear her chair if she uses it to stand up to try to go to the bathroom (It's a lift chair so quite noisy thank goodness) and I can hear her grunting when she tries to get out of the chair forgetting to use her remote. I can hear her call for help at times she remembers through the baby monitor and then I can just open my eyes for a second if I hear noise and look to see she's still sleeping or is instead moving around needing a bathroom break. Baby monitors are the best invention in the world in my opinion. I have them on her in every place she sits so I can move around a bit while she's resting and still have eyes on her.

I care for my grandma who wears depends. Sometimes she calls out to me in the middle of the night but sometimes she forgets and tries to get up so I have to listen for her. I'm a light sleeper and I was exhausted at first. I would have trouble like you are, going back to sleep and would be living off 2 hours a night if I was lucky. My body adjusted and now I can fall back to sleep almost immediately after getting up with her and I also take advantage of her nap time in the afternoon. Where she takes a two hour nap, I sneak in 45 minutes or so just so that I have time to my things and rest a bit. I have found that it helps a ton even if it's a no sleep kind of night to be able to rest an hour. I have a caregiver as well who helps me during the day so I am able to work a few hours two days a week. I could technically work all 5 days but honestly I needed the time for me to go do errands and I"m in the process of moving and wanted the time to pack up a huge house now that my mother has passed away and its now my responsibility. My grandma is up 2 or 3 times a night going to the bathroom (basically she goes to bed around 9:30, is up around 12, 3 and 6 which is for the day) on her good nights. Other nights it can get bad and if she has a UTI watch out as it means no sleep for me for a few nights until the medicine kicks in. It's not easy but I manage alone. As I said my body adjusted and I'm sure yours will too just don't be afraid to rest for a bit while she is resting so that you keep your strength up.

Wow, I have to ask if you're sure you're ready for this MAJOR responsibility? Caregiving is mind-blowing difficult!

JudyAnn are you visiting your mother a lot where she is, now? You see how many activities the facility offers. How are you going to provide stimulation and peer contact and interesting activities in your house? There are certainly ways it can be done. They all involve effort from you and cooperation on her part.

Being involved with her in some of the activities where she is now could be quality time. My mom lived with my newly-retired sister for about a year before her mobility problems and dementia became too much for at-home care. It is very important for Mom to have her hair looking nice. Toward to end of her stay my sister could not even talk her into going to the hair dresser. Now the hair dresser at the nh comes for her weekly, wheels her to the shop, and then wheels her to lunch or where ever she needs to be next. There is live entertainment at least once a week, and she doesn't even have to struggle into a jacket! I try to go when they have certain crafts scheduled that I know are helper-intensive. One sister always meets the nh van at Walmart when they go and takes Mom around. Another sister went with the nh group to the local 4th of July parade. Another sister (there are 4 of us!) and I took Mom and her friend to an outdoor apple festive the nh put on. (Volunteers are available for those who have no family member to help.) In other words, Mom has gone from watching television all day and dreading any trips at all to participating in lots of activities. Instead of sitting alone a lot, we come in to find her having coffee and talking to other residents.

Are you sure that taking away your mother's current social life, moving away from people she has been used to for three years, and reducing the number of activities available to her will be an improvement to her quality of life?

What if after a good night's rest you visited her after breakfast and did activities with her, if there is something scheduled she particularly likes, or sat and chatted with her and other residents she likes, or wheeled her around the ground (or helped her if she uses a walker) and commented on the changing seasons or the odd picture in the hallway? Admired the decorations on the residents' doors? Took her out to pick out a new decoration for her door? (If she is able to ride in a car OK). The next day go for a few hours after lunch and play cards with her. One evening bring in photo albums of your time abroad and tell her about your life there.

I really can understand that you want to have quality time with your mother. I am not at all sure that requires you to do the hands-on caregiving.

Why not give visiting her where she is a chance for a couple of months, before you decide you have to move her to achieve your goal?

I have personally been 'three shifts' for six years now. Mom got up between three and EIGHT TO NINE times a night to go to the bathroom for over 120 days until she went on Vesicare thru the new urologist. And yes, I do all the cooking, cleaning, driving, bathing, dressing etc. She's almost 93, frail, and not ambulatory. If you have access to help at night USE THEM.

Bed rails can be risky in that people who really want to get out of bed can do more harm trying to get over or around the rail than they would without it.

There isn't such a thing as a risk-free life, especially in old age or with dementia. But it is usually good to be aware of the risks and to recognize which ones we can minimize.

Just to be clear, it is risky in that she may try to get out of bed by herself. I used a bed rail for a while and took the commode out of the room and also moved the walker out of the room. I also left an intercom phone with her so she could press one button to call me if she really needed me. She needed it once when she got nauseous in the middle of the night and had to vomit, but otherwise she has let me sleep. Her aide comes in in the morning and helps her sponge bathe and dress. As Rainmom said, she must be kept very clean, and may also need A&D or diaper ointment applied once per day.

Telling a continent adult to go ahead and pee in her disposable underwear is a problematic concept. If the person is at all lucid, even a little, that is not an acceptable idea. They tried it on me once when I was in ICU and they finally had to bring in a bedside commode and get me up. Even when Mother had a catheter it was very very difficult to explain to her that she didn't need to get up when she felt the urge to pee. Now she wears disposables at all times but telling someone who was potty trained 93 years ago that she should pee in her pants just doesn't cut it. If the aides don't come right away to toilet her I say, "don't worry if you leak a little, Ma, you have a pad on to catch it." and that calms her down.

Maybe you can convince someone to just go ahead and pee in her diaper at night and not to get out of bed -- maybe. But I'd bet against it.

JudyAnn, I gave been caring for my mother for almost 10 years. I would not make any other choice. She is totally incontinent, is no longer mobile, and cannot really make her needs known. She has advanced Alzheimers Disease. At this point, she sleeps with 2 pair of pull-ups and a bladder pad between. She does not wake during the night any more. She did for a while. I managed by taking naps when I could. Even now that she sleeps through the night, I wake up.

She is at hospice for a 5 day respite and I plan on sleeping late. Yes, I am having her do at home hospice so there is still a lot on my plate. For the next few days, however, those responsibilities are lifted. And I will be ready and happy to have her come home on Monday.

JudyAnn, thanks for the update on the reason why you want your Mom to live with you. Even though I never lived with my parents nor they with me, I have read over the past couple of years the trials and tribulations of caring for an elder in one's home. It isn't pretty. Quality time and care time are as different as night and day.

And you will need to elder-proof your home. Those lovely items you bought while living overseas will need to be put away due to Mom's mobility problems, as you don't want them broken nor Mom. Same with those nice accent rugs bought in far away lands. Mom will need a main floor bedroom/full bath. The bathroom will need grab bars.

Your quality time will slowly morph into resentment time. And your Mom will start to feel the same way, missing her best friends forever at her old Assisted Living. Meals will need to be the same time as Assisted Living because that is what Mom was use to, and she may prefer their meals over yours.

Have you thought about what if something happens to you? Last year I fell and broke my shoulder. Any type of caregiving to an elder is out the window for months on end. I couldn't drive for 6 months, thus I had to cancel all my parents doctor appointments as they refused to use a taxi. It would take me a half hour just to get dress myself.... couldn't imagine meeting the needs of an elderly parent, too.

Lot of food for thought.