Hi, I'm new to this forum, so my apologies if this has been asked before.
My mom had a stroke about two years ago (just before her 71st birthday), so we moved her to an assisted living home closer to us and sold her house and belongings last year. She had surgery to remove a clot from the artery in her neck and she has been in good health since then. She does have ongoing diarrhea the doctors can't find a cause for so she just manages it herself with over the counter medications. She recovered nicely from her stroke, regained her speech and most all of her mobility. She does use a walker to get around when we go places, but otherwise walks around her studio apartment without it. She's mentally sharp as well.
Mom has never been a social person, so she does not participate in any of the activities at assisted living. She usually makes her own breakfast, and sometimes lunch. Dinner is the only meal she eats regularly there. The staff does bring her medications, but otherwise she takes care of herself (bathing, dressing, toileting, some laundry, over the counter medications, etc.).
Her little studio apartment is smaller than most motel rooms but costs about $3800 per month. At this rate she will run out of money in about 6-7 years. Our plan is to apply for Medicaid at that time, but that won't cover the vast majority of her personal expenses (cable TV, phone, hair and nail care, personal groceries, etc.). The "personal allowance" Medicaid provides wouldn't even pay her cable bill (the only thing she does). We are retiring in less than 5 years so we won't really be able to help financially at that point.
Since she isn't utilizing most of the assisted living services, I have thought about getting her own apartment at a new 55+ apartment building in town. There's no medical or other services included, so I figured I would have to arrange an emergency call button, weekly cleaning, and maybe meal deliveries. Maybe something like PillPack for her medications. She would have a larger 1 bedroom apartment, and by my rough estimations her money would last at least 16 years (about age 89).
Mom doesn't complain about assisted living much, but I worry more about the financial aspects since I pay her bills. It seems so wasteful to spend that money for services she doesn't even use. It's also sad her entire life is in that tiny little studio apartment. She seems quite capable of living on her own, but I do worry about her being all alone without the daily interaction with others at meal times or when the caregivers stop by with meds. I am a little concerned she may not eat as well on her own. I also worry that while she is in good health now, that could easily change in a year or two and be back where we started. My wife's mom is 80 years old and despite being in worse health, still lives at home on her own. So I can't help but wonder why my mom couldn't live on her own. I keep going back and forth whether to give her independence again, or just leave things alone as they are. I know I would prefer to be on my own if I was in her place, but can't say I'm excited about having to move her and all that entails. I'm not sure what to do. Any thoughts?
Best of luck!
Afterwards, another friend who has Alzheimer’s and has also had their gallbladder removed tried the Xymogen brand and it didn’t clear up their diarrhea.
I don’t know if it would work for your Mom but it might be worth a try.
Can he order it safely online? If he can’t find a doc?
Finances were obviously a big reason I started looking into this, and I guess I got a little hopeful after seeing the new senior apartments in town. I needed to take a step back and realize mom wasn't asking for this, it was me wanting to improve her situation.
I like to think mom is doing well and can manage on her own, but the reality is I only see her a few hours every week or two. So I really don't know what her day to day routines and requirements are. Then there are the underlying health concerns I shouldn't overlook.
After 20 years apart I had accepted mom was gone and I'd probably never see her again. Then she had the stroke and my life went from no contact, to full on managing everything for her. It has been an adjustment, and admittedly I didn't want any part of caring for her in the beginning. But, with no one else to look out for her, necessity changed my attitude.
Our lives are already quite busy caring for our two moms. Adding even more responsibilities is probably not the wisest decision at this time in our life.
Anyway, thanks again everyone.
Be at peace with whatever you decide. Take care. You are entitled to enjoying your life.
Good advice. Glad you found peace with your dad’s situation.
I watched a PBS show about a woman that developed a mental illness in her 20s, she ended up passing away in the winter in an empty house, she had wandered away from her facility and she believed she was okay, she kept a journal of her life. She knew but didn't know, maybe that is where your mom lives.
I think keeping her where she seems contented is a great idea.
I promise it is easier for you and your wife. Being the son is so much better than being the caregiver.
Well done! Amazing how talking can change our perceptions.
Is that a third party organization to get funds? My dad is WW11 vet. I may be doing this as well. Just not sure of the best way, third party that can speed things up, directly with vets or elder attorney? Gets confusing. Have heard different things.
My only thought is that your Mom is where there are people around all the time. Not 'in her face' , but there to notice if something is off what it should be.
You mentioned that your Mom had lain on the floor for 4 days before being found after the stroke. That would be my answer... That could happen again if she lives alone again. The other thing, should there be the slightest start of dementia, a move could really speed up the pace!!
If she does not beg to move, and she is safe and well looked after, I would leave it be and pray she lives long enough to run out of money!!!
God Bless You for being the caring person you are that you are looking out for possible problems. No one knows what can happen in in 6-7 years, though.
I went through and am still going through the, got so much better with all the care, don't need care anymore. I cringe when my phone rings because I know the train wreck is coming, just don't know when.
Just curious, do you think her dead husband could have been the cause of her isolating herself? That is what abusers do to their victims. If that could be a yes, she may come out of her hole more and more, it takes a long time to recover from decades of abuse and she might need more time. Just a thought may be way off base. I would just hate to see her loose the progress made, she is after all socializing more now.
Such a tough spot to be in for sure.
Best of luck getting the doctors input.
Ironically, my wife and I actually drove by her house a few weeks before her stroke on our way home from a vacation. It looked like an abandoned drug house, cracked windows, peeling paint, abandoned trailers, and the yard was three feet high with weeds. Neither of us felt safe to stop at that house. My mom was always fanatic about cleaning and take care of things, so we figured she must have moved without telling us and abandoned the house. After her stroke we discovered she was actually living there. The first time we went in the house it was disgusting. Garbage piled in every room, smelled really bad, carpets had stains everywhere, nicotine stains running down the walls, etc. I still can't believe her life had come to that.
In light of the info you just posted, being TOO empathetic may backfire on you. Also, what boehmc said... YOU are not responsible for her finances.
You may want to tease out gently how much of this is really on you and how much of this is about maybe you having a mom again or you trying to protect her, save her, fix her world. (I know this feeling intimately, I am not trying to condescend here. It is a very powerful urge if you are the kid that people relied on or had to be independent and fix things for others.) After reading more details, I can honestly say that you are doing such a GOOD JOB with what you have in place. Truly, you are. You are caring for her in a reasonable and kind manner and have done a really hard thing to let it go and allow the two of you to enjoy a decent relationship.
Well, my book for the morning is complete, lol. I wish you the best as you move forward.
It's really that you're ripping through her money faster than necessary that's bugging you, is it? Nothing wrong with that, you're wise to give it thought.
I think that if I were you I would not want to tinker with her for now, at least. Her vascular surgeon is pleased with her, but she has A Fib and she has had a stroke. She has this chronic diarrhoea. She tends to isolate herself.
Speaking of which - I don't want to intrude, but her twenty years of self-isolation, and thirteen years of no contact at all - what's going on?
At the moment, you have this delicately balanced person under control in a safe, familiar place. I think you have to be very certain it's going to help before you make any major changes.
And yes, the finances concern me. She should be good for another 6-7 years, barring a major medical issue, but I don't know what will happen after that. We'll try to help in any way we can, but we won't have much disposable income at that point since we'll be retired.
I appreciate the feedback. Thank you.
It doesn’t sound like your Mom is chomping at the bit to get out. Nor at 73 and ‘mentally sharp’ is she doing what needs to be done to make that happen.
And if you haven’t been in contact, I would imagine there is a reason. If she gets less mentally sharp, you may encounter that reason again in spades. Right now she has you and the AL staff. If you are her only support system, you and your family WILL be the ones to bear the heavy weight of any decline. And secondary strokes are very, very common.
She isn’t socializing, she has had falls, diarrhea is an ongoing issue (this may be an after-effect of the stroke), you are concerned about whether she would eat properly, someone else dispenses her meds, someone else does some of her laundry and you have to manage her finances. This doesn’t sound like very healthy and mentally sharp for a 73-year-old. I mean that kindly. From this perspective, it sounds like AL is the proper fit at the proper time. A small space sounds like what she needs. She does have access to common areas, she isn’t trapped.
I would imagine many of us here are a bit envious that someone is where they need to be, lol.
One PS on the diarrhea, that could be a post-stroke issue that just won’t go away. We experienced that and since then have heard of it many times over. I am always amazed doctors don’t mention it more.
One fall or change in her condition could move you into the role of cleaner-upper extraordinaire... those messes are very physically demanding. Very. I know that is an “if”, but that is one thing that would rock her world and yours very quickly if she were in an IL situation.
Right now, it sounds like she has all of the “props” in place that many of us here know help an elder seem to be functioning at maybe a higher level than they are. The heavy lifting is done by others, so they seem to be sailing smoothly. You can set some of those things up in an IL, but YOU will likely have a lot more work coordinating people, missed shifts of caregivers, she may kick them out (you won’t know if this is going to happen until she is fully moved), emergency diarrhea clean up, and no real back up in the form of staff. You have to decide if you are ok with that. Right now, she has people and a routine.
Just things to keep in mind. If she was determined to leave and had investigated all of it HERSELF (her saying it wishfully and actually pursuing it are two different things) and started to set things up, I would be much more inclined to see an IL move as a good step. But it sounds like you are thinking you have to initiate this. That isn’t usually a good sign.
It sounds like you may not be close enough to her (and I don’t mean that in an ugly way, day to day knowing someone doesn’t usually happen with those big gaps) to know whether she isn’t as mentally sharp as you think. If you are really considering this move, I would probe and probe and probe. If you want ideas on how to do that, I can add more later, as can others, I am sure.
Money is important. She could outlive hers. But, if she does have to go on Medicaid, it will be 6-7 years down the road. She may be in a different facility needing a higher level of care and need much less pin money. Many facilities have cable for the residents, she may not need a phone, or care about her nails, or... she may not have everything, but she would be cared for. For now, less redundant groceries means less cost.
Only you know this situation... I just wanted to throw out there that during that time frame MANY things could change.
Will your mom wear a medical alert device. Will she allow a camera in her apartment should you need to check on her safety (not to spy)? I will say with your report of her clogged arteries the chance of another stroke is high. So weigh the odds of having her more independent and then if she has another stroke...going the Medicaid route for LTC. It’s a hard decision.
I did see her briefly 13 years ago when her husband died. She showed up at the burial with some sketchy looking strangers, got a quick hug, then she was gone again without saying anything.
I honestly never expected to see mom again, so when the rehab center contacted me to let me know she had a stroke it was quite the surprise. She had spent five days on the floor of her home before she was able to climb up and get the phone to call for help. She was in really bad shape from the stroke when I first saw her, and after 20 years I didn't even recognize her.
Sadly she had turned to several people during those years who took advantage of her, stole from her, and just generally trashed her house. It took us nearly a year to clean up all the trash and fix the house up to a state we could sell it. Complicated by the fact her house was two hours away from us.
Since then I've taken responsibility for all of her finances, take her shopping and to doctor appointments, and we get along fine. She seems happy now, so I didn't see any point in bringing up those last 20 years, just appreciate the time we have now.
With the clogged arteries and afib she has a high chance of another stroke. She seems to be doing well with the medications, but there's no guarantee that will continue. I see her now and she looks great. All of her medical tests are coming back with better results than I have myself. Outwardly there doesn't seem to be any need for assisted living, but that could all change quickly and we would be in another mess.
It's tough to know what to do. Mom seems happy, doesn't really complain about the assisted living, and hasn't asked to move out recently. So it's really just me wanting a better quality of life for my mom. That's why I haven't really brought it up with her yet, I don't want to cause problems if she is content where she is.
I wouldn't really want to go through everything to set her up in assisted living again if things go bad once she is on her own.
You have every very right to be concerned about money. More so, than most here with older parents. My mom is 93! Your mom is still relatively young.
The plus is she will be closer to you. Maybe dinner with you a few times a week. Some 55 and up have activities. Make a list, pros and cons. If there are more pros then go with the 55 and up. I will be 70 and not sure I would want to be in an AL at my age. Mom may do better on her own.
Her problem...does she drink coffee. Apple juice did a number on Mom. I stopped both and things improved. What is she eating? Has she been checked for Crohns?
They ran all kinds of tests, colonoscopy, stool tests, blood tests, etc. and could not find a cause for her diarrhea. They just recommended managing it with over the counter imodium.
Did you ask any of her doctors if they thought she could now transition back to independent living? I would definitely contact them for their input.
She was very blessed to have been able to recover from this stroke, so you know, it was probably the clogged artery in her neck that caused the stroke, not bad eating habits. My grandma had a series of strokes from the clogged artery in her neck and it was never recovered from, she went from fine on Friday to full blown dementia on Monday.
There are things that you should price out so you have a realistic idea of what she is actually paying for. I imagine that the AL comes in daily for light housekeeping, they make the bed, empty trash, sweep or run the vacuum, clean any messes in the bathroom. So you would need a weekly cleaner if mom isn't tidy or has incontinence issues. Daily cleaning only takes a few moments, weekly or biweekly takes a couple+ hours, get pricing for weekly, how much for a home chef to come in and do meals that she will eat, I say home chef because you are worried about her eating and some meal delivery is garbage and she wouldn't eat it even if delivered. Laundry is no big deal if she isn't incontinent, you will be changing her bedding, AL does this and it should be twice a week and as needed. Pills can be pocketed for ease of understanding or you can get a dispenser that spits out pills at scheduled times. In home care should be checked into, you say it will be cheaper, I wouldn't count on that, research for your area and be realistic in the number of hours, my area has a 3 hour minimum and a 25.00 hourly rate, 75.00 daily minimum adds up quickly and it may be more in your area.
Her self isolation is going to be the biggest nut to turn, she will decline without socialization. It is a proven fact that we need human contact to be our healthiest. Does the new apartment have any social activities or is there some place close that she can participate with others regularly to have social connections? Is there a senior facility that offers group meals in your area?
I believe that some people can transition out of AL when they were admitted due to a medical condition that has since been recovered from. She has the financial wherewithal to do whatever she wants, so I say go for it. Just do your homework and include her in all decisions, if she isn't able to participate in these decisions she probably shouldn't live alone with no supports in place.
If or when she runs out of money you modify her expenses and you set up a miller trust or a qualified income trust through an attorney and that will help her qualify for aid. But that is far down the road based on your info and who knows what will be available that far down the road.
Let us know what happens.
There are a lot of factors to consider with the apartment option. I've been pricing out all of the various care, meal, and cleaning options and it still looks like it would cost much less than the AL and give her more living space. She wouldn't need medical care, all the AL does is bring her medicine in the morning. I'm sure she could manage her meds fine on her own, especially with some kind of dispenser. As far as I know, the AL only does weekly cleaning, but I could be wrong. Something to discuss with her.
Mom lived alone at home for 13 years before her stroke. Unfortunately, we had no contact during that time so I don't know how her current condition compares to before her stroke. All I can go on is the last year and a half, and I don't know how much of her improvement is due to the care at the AL home. Better diet, more exercise, and social interaction. I do worry that she would regress if she was out on her own again.
The new apartment building is just basic senior apartments. There are a few common areas for residents, but no organized activities of any kind. Without the incentive to go out for her meals, I doubt she would have much interaction with other residents.
I still worry about the unknown. The other three arteries in her neck are still clogged, just not enough to do surgery on. I doubt the clogging is restricted to just her neck, so there's no way to predict what may happen. She also has an afib heart condition, but all of these conditions are managed well so far with medications. She had a couple of minor falls since moving to the AL, and while there haven't been any issues over the last year, it may just be a good period in a longer time frame. She is doing well now, but I don't want to be naive and think she'll always be that way. There's no guarantee she'll even live the 6-7 years till her money runs out in AL. There's also a certain comfort knowing someone is immediately available in AL if she does need help with anything.
One day I'm all for it, the next day I just don't want to complicate things further.
If your mom is doing well, I say go for it. Yup, the move is gonna kill ya but its a short term thing getting it done. Hire help.
The paring down of things is where the problem comes in- in my case that was the worst of it. 4 bedroom 3100 sq ft home PACKED TO THE MAX- down to a 1 bedroom apt. I had 3 weeks, to pick, pack and clean....then transport a 91 yr old, very pissed woman 1500 miles with her stuff. She would not let anyone in to help me either....everyone was accused of stealing. I thought I was gonna die! The fighting was epic! but if you can get by that, your on the right track.
You mention a concern about her perhaps not eating regularly if on her own. That is a valid concern. You also mention your retirement plans for a few years from now. Would your mom expect you to "cater" to her once you are no longer working? You say she does "some" laundry. Does the AL do the bulk of her laundry? If she moved to a 55+ would you end up doing her laundry?
Another concern with living in a regular apartment is missing the socialization piece. Does she have friends that she will plan outings with?
I get that is goes against the grain to pay for service not being used. I'd feel the same. And yes 71 is younger than the average assisted living resident. As far as medication management, she may not need it now but there may come a time when she does.
Are there more affordable ALs you would consider that maybe are a little further away (say 1 or 2 hours). That would still be close enough for you visit her often and keep tabs.
Tough decisions and I wish you the best.
I don't know what the current situation is, but mom preferred to wash her own clothes and let the AL wash towels and bedding. I wouldn't mind doing a load once a week or so, but am open to hiring those tasks out.
Mom keeps to herself, no friends or family. Before her stroke we hadn't heard from her in over 20 years, she lived alone and just wanted to be left alone. She's kind of forced to be social in the AL, but I know it's not something she's really comfortable with.
I looked at AL's and IL's in neighboring counties and the rates were basically the same. Not worth the drive or hassle of relocating.
My biggest concern right now is her eating. She didn't eat very well before her stroke (probably contributed to it), and I assume she would revert to that if left to her own. I also worry about her forgetting a pot on the stove or something, but I have no real basis for that concern. She uses a coffee pot, toaster and microwave now with no issues.
Talk to her nurses and doctors about about her health to get a better picture too. May help you decide what is best. Take care.
Unfortunately, mom never worked or served in the military, so the only income she receives is from her husbands railroad pension, and about 225K from selling her house last year. Ironically, her pension income disqualifies her for most government aid.
She just went through a whole host of medical tests, and everything came back great. Her vascular surgeon said everything looked so good there was no reason to come back for two years.
There aren't many independent facilities in our area, but the few I've seen cost about as much or more than she's paying now. It wouldn't really be worth the move just to extend her funds a few months at most. Not to mention, every independent facility I've seen is full with long waiting lists.
The new senior apartments in town is only 15 minutes from my house, so it would be easier for me to check on mom. Even with the $1100-1400 rent, additional food expenses, medical alert, utilities, and possible meal delivery or in-home care the total cost would be much less. They just opened a few months ago, so I don't expect the apartments to be available much longer.
It's a tough call. I haven't heard of many people going on their own after being in assisted living, so I'm afraid I'm overlooking something. I figured I would ask a few light questions next time I see mom to get a feel for what she wants. If she's happy where she is, I won't pursue it anymore. I just don't know what we're going to do when her money runs out.