Mom living alone with dementia. Is it ok?

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Mom living alone with dementia. Is it ok?

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Mom lives alone and has moderate dementia. I live one street over. I work full time and have someone to come three hours a day for companionship, to feed her lunch and do some light cleaning. I am there three to four times a day. She is able to use her walker to get around and her house ect. I take care of meals, showers, bills and everything else she may need. She also has a cat that she loves. Whenever I talk about assisted living she gets upset. I feel guilty when she is left alone and worry We do have a nanny cam also. Should I make her go to assisted living ? I do admit that I don’t stay long on my visits because I’m tired when I get home from work. I also took care of my dad for 4 years before he died. He had Parkinson’s. I am somewhat burned out but manage to keep going on. Is it ok what I’m doing?

Activities of Daily Living Alzheimer's & Dementia Care Decisions Living Independently

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Clearly you are seeing things that worry you? What are those things? Might she wander? Into the streets and get lost? Might she start a fire with cooking or the store or electrical equipment? You say she has dementia, but none of us can know the level you are speaking of. I wonder if you can tell us more.

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Alva asked important questions that will help responders provide appropriate answers. In the meantime for your sanity's sake you can increase the hours of her in-home care until the cost is equal to the cost of AL. It is very normal for her to become very upset, but maybe it may have to do with how your conversation around this topic unfolds, if it comes up in moments of exhaustion and contention and exasperation. This will never work.

With my inlaws I started by visiting places by myself first and gathering cost info (as this is not published on websites and they are resistant to quoting over the phone). Ask if they have a waiting list. Ask if they provide for Medicaid residents. Make sure they have care from AL to hospice so your mom will never need to move. Take pictures yourself, and don't show her the marketing brochures. Get pics of the residents doing things and maybe even inside an apartment. Show activity areas, grounds, etc. And ask about having a pet. THEN you can sit down to a nice, calm dinner and start a conversation about how you are not able to keep up with her care and maintaining your house. See if she's receptive or sympathetic. Show her more than 1 place so that she feels that she has "buy in" in the decision-making process for her future. Have answers if she is worried about paying for it. It may take more than one conversation so try to be patient. If she never comes around, some back to this forum for "next steps". Blessings!

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i am not worried that she will wander or turn on the stove. She only sits. That’s all she wants to do. She sits all day. The only time she will get up is when she goes to the bathroom or I take her out to eat or the doctors. In the winter she doesn’t like to go out at all because she’s always cold. I’m worried that she is lonely.

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Remember, you are thinking with your mind. She may not be lonely. My hubby does not need people, even me I think, around. It tires him to have to think to respond to people. I believe that "social" part of hls brain is going. So if she doesn't say something just assume she doesn't need the intellectual stimulation like we do.

I don't have dementia and I have to admit the grandchildren tire me out. I am not used to the noise.

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Wow, sounds like a perfect situation for now! Maybe have a paid companion more hours. Nanny cam, good idea. Maybe a smoke alarm that calls the fire department if not shut off? A way to disable the stove and microwave when no one is there? Maybe talk with an expert about red flags that this situation is no longer perfect--such as wandering, fears, mom keeps calling 911, medical issues, mom lets strangers into the house, etc.

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How does she get along with her aide?

I wouldn't think that she would be lonely, honestly having someone with you for 3 hours a day and you in and out 3 or 4 times doesn't leave time to be lonely.

I would be more concerned about her ability to respond to danger. Would she know how to safely leave the house if, God forbid, there was a fire or the house filled with smoke? Would she understand if she needed to call 911 because she was in distress?

That would be my largest concerns.

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As for her isolation--I have read that more stimulation can retain some of the brain's abilities and responses a bit longer. Even if she doesn't enjoy being around the confusion and stimulation of noise, conversation, movement, people, social situations--it can still help her brain practice responding to sensory input. Conversation, however difficult it is, will force her to practice listening and speaking and following directions--she will be able to retain those skills a bit longer with daily practice--even if she doesn't like it! The same goes for walking, sitting down and standing up on her own. Consider having a physical therapist and occupational therapist come to the house to work with her on a regular basis. Consider bringing her to an adult day program, just try it once or twice, stay with her the first time if you can and gently encourage her to try to engage or participate in whatever way she can. It might not seem like she can do much, but if practice and stimulation can slow down her loss of skills, it's worth it. If she's screaming and biting as you drag her out the door, OK, that won't work out. But if she's just complaining or whimpering or ignoring you, she can keep complaining as you help her to the car and drive her to the adult day program. If she's not actually throwing things at the physical therapist, she could possibly be coaxed and nudged to engage. You might be surprised at how positively she will respond to other people while she totally ignores you--many others on this forum have noticed the same thing. Good luck!

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If all she wants to do is sit in her own house with her four-legged companion, why on Earth should anyone insist that she move somewhere else? Why would we want to drag her, possible whimpering or otherwise expressing that she doesn't want to go, to anything -- day program, physical therapy, whatever?

We drag kids to things they don't want because we know that, developmentally, they're going to need the skills they can develop there. But aged humans are not generally developing new skills.

It makes sense to have her evaluated for depression vs dementia (and don't forget bloodwork to check for vitamin deficiencies, which can mimic dementia). But if dementia is her diagnosis, why would anyone want her to spend her days being miserable doing things she doesn't want to do with people she doesn't want to see?

I often wonder whether we, as a culture, are forcing people into ALs because that's the best treatment for the next generation's feeling of guilt and futility (and because marketing works). The best treatment for your sense of guilt might be self-forgiveness (because you can't fix this) and acceptance (of her condition and desires), rather than forcing her to make a move she doesn't want.

What about letting her enjoy her remaining time doing what she wants to do in her own house?

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It is sad that the elderly can’t be left alone to sit in their homes. Problem is that cannot happen without people to shop and prepare food for them, clean up their homes, do yard work, laundry etc. yes, it all can be hired but still someone has to coordinate it all for them. And they get worse and worse so then managing medical treatment is difficult when the GP now tends to refer out for all the issues and you are left taking them to multiple doctors. While sitting, they need supervision and relatives who are constantly vigilant while being stressed with the details of their own life and work.

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This sounds ideal, honestly. Let your mother continue the way it is now because unfortunately, dementia only gets worse. Look into home care for a time that you will need it in the future, in other words, have a plan. Let It Be for now and give thanks for this time for her and you. BTW: you are doing a wonderful thing for your mother to be there for her and so close as well. All the best!

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Go ahead and research places and have a plan in place of where you'd send her if she gets worse. Have a second and third choice as well. Right now it sounds as if things are going ok. Would she be willing to go to a senior center or adult day care one or 2 days a week when the weather is nice? Be wary of increasing need on her part that slowly sucks up ALL of your time. Do not EVER allow yourself to feel guilty if you do have to move her into an AL.

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Right Now, It appears Here, Dear, YOU have a Handle and Cam, Ma'am, On Mom. No, Seems Okay but if things Get Worse, Have Adult Protective Services for the Elderly Intervene, Along with HER Doctor, angel.

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Although my mom didn't have dementia until her final few years her physical limitations caused her to become isolated in her home. Yes, she was an introvert and found comfort in the familiarity of her surroundings but in hindsight I think that moving her to a place where there was at least the possibility of social interaction and practical supports like meals, housekeeping and medical intervention if needed would have given her a much better quality of life. Your mother may not yet need assisted living but an independent living with the option of greater care down the road could be a wise move. Unless you plan to one day move in and care for her (or she is lucky enough to suddenly die in her sleep) she will eventually need to live in a more supportive environment, I think that sooner is better than waiting until there is a crisis and the sh&# hits the fan.

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My dad has been home with dimentia for several years. We started off with health aides filling a few hours a day and myself and family members taking shifts to fill gaps as more care was needed. We use Minuteman Senior Services. They provide meals on wheels during the week. He has a life line button that he used twice. He is home now with a live in 24/7 care. Unfortunately his funds are running out. We are considering a nursing home as he continues to decline, but we were told he may need an additional health aide in the facility because he is a fall risk. We cannot afford this kind of care. If we apply for Mass Health he may get some of the nursing home care paid for.My advice to you is plan for her future now. Unfortunately it will get worse. We have been fortunate to have him home for this long. His house is not secure (gifting) for several more months. We kept putting things off because we did not want to face reality.

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I just went thru the process with Mass Health. It is a major endeavor. I recommend hiring someone to do the paperwork.

(6)

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At some point it may become dangerous for her to live alone.
When the caregiver is not there are any of these potential:
She may wander off.
She may start the stove and forget about it. (unless you have disabled it)
Even a microwave can be a potential hazard.
Are there medications she can get to?
Are there cleaning supplies she can get to?
Is is possible that she would open the door for someone?

And when you do have to consider placing her I would opt for Memory Care rather than Assisted Living. I would imagine that she would probably transition to Memory Care soon after moving in. I would think just the move would trigger a decline.
Your other option would be to have caregivers come in to her home for longer than the 3 hours.

It is a difficult decision.
She will continue to decline and at some point will need 27/7 care.

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I strongly disagree with your advice to place mom in memory care before she needs to be there. Anyone who can still oppose going to AL would be miserable and angry. Having dementia does not mean memory care - most people in AL have levels of dementia. We were lucky enough to keep our mom at home until she was truly ready for memory care and the transition was easy. She is “happy” there, but it would be a different story if we had moved her there before she was ready. If the daughter can’t take her mother into her home (or move in with her mother), then AL should be seriously considered for safety reasons.

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We have made the decision to move mom to assisted living. It’s 4 miles away. I will plan to be there as much as I can and when I can’t be there I know she will be in safe hands. She is moving in this Friday. I am at peace with the decision. She is happy but I think she will very soon love to there because she was always a social person.

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Sounds like a great decision. But I would caution you to follow the facility's advice on how much you should be there until she adjusts. Don't fall into the habit of going there right after work and staying there until your mother goes to bed. (There was a woman at my mother's NH who stayed every night until her mother went to sleep. There were also some residents who always seemed to have a relative -- yes, usually a daughter -- with them during the day.)

Your mother may try to guilt you into being with her all the time, since she may complain that you put her there. Recognize how FOG (Fear, Obligation, Guilt) can affect your life.

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So agreeing with Grandma1954. Good that you're thinking of all this now. While your mom might be "okay" for now, she will decline and/or a UTI might really set off dangerous behavior without anyone there to see her.

Perhaps looking at AL or MC now and perhaps get her on a waiting list or do research for how it is paid.

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Sounds very similar to my situation. My mom is 89 and wants to be in her own home. I think you are doing a great job.

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yeah and one day she will fall and break her hip and be on the floor for days

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I had been researching assisted living and memory care facilities for over a year and had a few picked out 'just in case'. My 93 year old dad lived in his own house with the help of daily caregivers for 6 hours a day up until September. I had always hinted about moving to assisted living but he pushed back and pushed back. It took a hospitalization in September, after becoming dehydrated, to allow the doctors to say he couldn't go home. Luckily, the facility at the top of my list had an opening so the move was an easy one. We have ended up bringing in outside caregivers 3 days a week who keep him company and take him back to his house for 'visits'. They are also responsible to get him to his variety of doctor visits. He is making friends, eating 3 good meals a day, getting plenty of beverages, has 24 hour nursing care available, is attending daily exercise classes, and their bus takes him to his church on Sunday's. But he still insists on trying to move back home (which I will not do). I would say if nothing else, start visiting facilities and find a few you like. I can't imagine having to do that on short notice. Luckily I had done my homework (and I think the hospital was a bit surprised!)

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I also started researching places 3 years before we needed one. I took Dad with me so he could get used to the idea and give me his impressions. I looked at both AL and Memory Care so I wouldn't have to move him twice. By the time we needed a place, it was the Memory Care and I had a place in mind. We never found EXACTLY what we were looking for but the places got better during our search. The research gave me a good idea what flags to look for. The one mistake I made was not ensuring they had a lift. We also continued his companion care in Memory Care to give him continuity and a watchdog. It is impossible to expect 1:1 care provided by the facility and their stimulation activities were disappointing. But they liked him and that helped.

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no.
she needs 24/7 supervision.

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CORRECT!

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My mom lived by herself when we had seen signs of dementia (not being able to dial phone numbers, no longer being able to cook for herself, etc.) We finally made the very hard decision after she had several hallucinations, that she could no longer live by herself. Mom is a complicated person and it would take too long to go into her personality, but after losing my dad after being married for 63 years, we put her into a memory care facility not too far from my brother and I. I still feel very, very guilty about putting her there, but it is a very nice place with caring staff that we feel comfortable with. Is mom happy? Not at all. Our parents have their own independence, and as mom often states, she does not being told when to get up, when to shower, etc. They have various activities for mom, and try to keep her stimulated mentally. We realize mom needed 24/7 care and for now, the facility is the best place for her. You know your mom, her personality, but the bottom line is, what is best for her.

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Hmm, sounds very familiar, same situation. My mom didn't like the place either, until she met a man 6 weeks ago, another resident in her building. Now she says she's "thinking about the future" with him. Just goes to show....you never know what's going to happen next, even in a secured facility.

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I just read where you are placing mom.

That is great news, that she will be safe and cared for.

Remember to give her plenty of time to adjust, it does take a while, it is a lot of change.

If she was a social butterfly in the past she will definitely find some happiness in all the different people and activities.

Well done on a difficult job.

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It is fine what you are doing as long as you want to do what you do and can handle it but when you are dramatically being affected by behaviors and deeds, you cannot allow it to continue or your life will go down the boob tube. The day will come where she may have to go into a facility so you can live your life. That is what it should be. No one has the right, and I care not why they do what they do, to harm and cause problems for others - ever.

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Mild dementia is not the end of the world. I wouldn't force her to move into assisted living. I didn't "force" my dad to move until the day I found him staring at the TV (off) in the dark livingroom. I asked him what he ate that day and he said nothing because he couldn't decide what to eat. It only took a few questions and we went out and bought him a mobile home and parked it in my front yard - yes, I had to get permission from the county supervisor and promised to remove it after Pop passed. He lived well for about 5 more years living in my front yard! He still had his independence but with me being close enough to protect him and assist him.

It sounds to me like you are doing what is needed by providing a companion to assist and feed her as well as being company. I would say not to move her; let her remain in her home with her cat for as long as possible.

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Wow, RayLin,
You are so cool.
R27

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When my Mom set the sleeve of her robe on fire, I realized it was too dangerous for her to remain alone. Thankfully, she was not harmed and she didn't burn down the condo.

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Dementia is a vicious disease. They each progress different. You never know when they will slip into the next stage. I wouldn't tell her that she is getting assisted living. She needs to have someone with her at all times. They can go from knowing their surroundings to totally confused in a blink of an eye.

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Exactly... there is no strict time-line or way to plan for sudden changes! If someone else is there 24/7, it would be better, but still things could happen, as you say, in the blink of an eye. Each of us must make the decision by knowing the current status, observing a lot and knowing what might come. It isn't easy or fun, but sometimes we have to take the parent role and care for them as we would our very young children.

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I love people that think demanding they know the best and dump her is always the solution, you guys need to start your own forum with that type of support...

Has your mom been evaluated.?
You seem to have everything under control and you seem to be allowing your mother to be happy in her home with her cat... I personally think your doing great just keep a close eye on her dementia can change rapidly day from day... you'll know when the time comes what you have to do, until that time let mom be mom and enjoy what's left... that's really all both of you want anyways, as long as she's not wondering off or having severe issues when alone you and your mom should be fine.
If you can afford it and if your that concerned increase the setters time or hire a part time caregiver, just be aware, keep your eyes open for any changes and keep up the positive attitude.

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I find your idea that putting a loved one in a facility is dumping them.

I saw my dad frequently and I was daily dealing with his needs and issues.

Far from being dumped.

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You are caring for her needs, but what does she do in an emergency? Can she dial the fire department or the police department? Seems she is a homebody, so she probably never wanders.... but what is the plan if she must leave her home -(I'm thinking a fire)? Would she know how to contact you or a friend? If she can handle the emergencies, you are probably fine for now.

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There are several other things that you can do if you want to keep your mom at home for now. Install several home cams in key locations such as around where she usually sits, bathroom door/hall area, her bedroom, kitchen/stove area & connect them to your smartphone. That way when no one is there you can peek in on her to make sure that she hasn't fallen & is safe. We did that with my mom & it helped in the short periods of time when she was by herself. Also if she was active with a church or had a circle of friends, maybe they could sign up to spend an hour with her when needed. Try an adult day care if you feel that might be a good fit. Visit AL's like others advised & have a plan for when she will no longer safe to stay @ home. Is there a next door neighbor that could check on her if you notice a problem on your phone & need help before you could get there Might need to set that up also. This may help give you some peace of mind. Take time to care for yourself & don't neglect your family.

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Yes, it's ok, until your health starts being affected....Family and all that wonderful stuff.

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With dementia-- you do not directly confront or expect rational responses--- as you knew here before-- she is no more-- so you redirect--- Mom, we are going to visit some friends this weekend. make sure she gets to talk with the social worker there who will be open and welcoming and plug her into some activities with ladies in her phase of dementia. Then if she likes it-- tell her the weekend is cost free and that she can stay end enjoy the place for a week also cost free-- and that you will care for the cat if she brings up -- who will care for the cat-- otherwise-- redirect her... and be that leader, not reacting to her.
if she stays at her home alone-- she will burn it down or worse--- she'll wander away and fall somewhere and break her shoulder or hip-- time to take the initiative. be alittle tricky and this Christmas, she'll have all new friends to enjoy the season. And you will not blow a gasket or have health troubles yourself.

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My answer is going to be "yes" and "no." Yes, it's good that you're able to be there so frequently. But, no because what happens when she has an accident? I.e. my sister in law is 2 years into an Alzheimer's diagnosis and is alone for 12 hours a day. Of course, she no longer uses a stovetop, range or oven. However, she does use the microwave and has started FIRES in it. There may come a time when your mom will require facility living.

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Mom living alone with dementia. Is it ok?

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