Can’t walk at all. All day with no help. Both siblings feel this is ok. There are resources for a caretaker however they don’t feel it’s necessary. What can I do at this point?
It's ALWAYS so nice to hear back from the original poster with positive improvements or good endings. In your case, it's positive improvements. I hope your dad will be approved for Medicaid. So, get back to us with the good ending. : )
We love good endings because they are so few and far between for a lot of us.
Thanks JJ, yes I do think you were right about the inheritance. I also thought this was to be temporary help. We will see how it works out and go from there. We applied for Medicaid not to long ago. My sibling who was in charge of that said she has a letter stating she has a case worker but as far as I know nothing has come if it. Hopefully all things work out. Thank you for your input.
My first thought is why there is a disagreement on getting care for Mom? The answer is usually money. Someone doesn't want to pay out of their own pocket or diminish their future inheritance. Until this is recognized, you can't solve the problem
I'm glad that you have home health helping Mom. If this is being paid for by Medicare, please be aware that this is probably temporary help. However, if Mom is indigent, then you can probably get a home health aide on a continuing basis through Medicaid. Also, if Mom's a widow and Dad was a veteran, check out the VA for help.
Disgustedtoo, Wow lost of info. Thank you. So I have some great news. Spoke to my siblings. We contacted her Dr. he has sent in to ins an order for home care and therapy. We had no idea he could do that. But the ins she has allows him to do this. Someone will be coming at least 4 times a week for 3-4 hours a day. We have found another care giver who can help out with extra hours when we need them. As for how things have improved, she didn’t want someone to help her but I pushed the issue and my siblings finally went along with it and that’s when we contacted her Dr. I think my sister with whom my mother lives realized she needs help with her care and my mother really needed the help too. So as of right now we will see what happens. I’m hoping for the best. Thank you😊
You say "She is basically bedridden." and "Can’t walk at all." yet she is home "All day with no help." What does "basically" mean?
Does she have a bedside commode to use and can she get to it safely herself? If not, how can she go all day without using a bathroom? Is she wearing depends? If so, would someone leave a baby or toddler in soiled diapers all day? Good lord, think of what havoc that could do!!! What does she eat/drink all day and how does she get access to it? Others asked about bedsores - can she shift her position in bed to prevent this?
Personally I agree with you that this is not an ideal situation. You initially say "Both siblings feel this is ok.", but you also later say this is what your mother wants too (no one coming in.)
You are "told she has a phone." Who said this? Both sisters or sisters and mom or just mom? Is this a portable or wired? If it is portable, what happens if she drops it or the battery dies? If wired (especially if it is an cable/internet phone), service can get interrupted (includes the portable too) and unless the cable number is registered with emergency services, if she were unable to speak they would NOT be able to locate her! Medical emergencies can impede mom's ability to place a call for help.
If she is in bed all day, more than likely she naps or dozes off - smoke inhalation and even worse carbon monoxide can incapacitate quickly without waking you up! If she were left alone for quick trips, ok. All day? No. I presume this is the case because your sisters work. Are you currently also working? Can you or either of them provide any assistance by being there for at least some of the time?
Agreed that if someone is considered 'competent', there probably is not much that can be done. Bringing in APS, if they would even go, might bring about some nasty consequences. It might be better to explore any and all other options first. The question I would pose here: is she really competent?
One can seem to be very competent, even with earlier stages of dementia, but it does not mean that they can make appropriate decisions. Our mother was still living alone when dementia started. We were proactive as needed (take the car away, locked pill dispenser, took over finances, etc.) We then started with 3 days/week one hour visit from an aide, mainly as a check on her (we also had some cameras, but there were only two inside and could not see everything!) and to see that she took her medications. The intent was to keep her in her own home as long as possible. That was upped to 5 days/week, but this plan didn't last long when she (like your mother) didn't want them there and refused to let them in after a few months.
My brothers offered to take her in. Nope. She's fine. She's independent. She can cook. Right. Food going bad in fridge and freezer because she would only eat frozen dinners, cereal and packaged foods (basically crap!) THAT is not cooking. If you brought up AL, same response - fine, independent, cook. Add to that, she would NEVER live in one of those places (yet for years she went to the 'open houses' with free lunch to 'check them out'.) I brought up what would you do if you fell and could not get to the phone (portable was missing for a while, long enough that battery was dead.) Her response was that she doesn't go downstairs. I said I never mentioned the stairs mom, but WRONG ANSWER mom, we can see you DO go downstairs on the camera recordings! The dryer vent had not been cleaned in YEARS, so it was a fire waiting to happen! My brother replaced it all with better venting and found the phone while down there (where we NEVER go!) Her rationale about falling and needing help? I'll get help. Sure mom. Brain waves. Yelling when no one can hear you. Wave that magic wand. Whatever. You will NOT be able to get help. We started making plans to have her move.
Granted our mother was still mobile (she only recently started using a walker, and has had several tumbles in the year+ she's been in MC), but still.... Her hearing was bad and she often would forget to change the battery (no hearing in one ear, limited in the other.) How would she hear the alarms? She often couldn't even hear the phone!! One brother put in a flasher for the phone - she unplugged it.
So, literally days before the "move" didn't she injure her leg (couldn't tell anyone how when asked) and never sought care for it or even called one of us!! It festered for some days before my brother came up for the move. She ended up with cellulitis, which is a serious infection, even more so for someone her age!
For you Kitty06: *Make a list of dangers. *Consult with Fire Department about what concerns they might have in general for the elderly and add those to your list (you don't have to give them any details at this time.) *What are the living conditions - apartment, home, first or second floor or higher? Add those concerns to your list (even if FD gets a fire call, they do not know who is home or where in the home they might be! As awesome as the FD is, they do not have magical powers!!!) *Then have a family meeting (maybe with sisters first, to make them see some rationale in this.) - What are the contingency plans? - Are sisters (or you) close enough at work to at least do a lunchtime check? - Are there any other family members or friends/neighbors who could check in or sit with her for a while "just to chat." or see if she needs anything?
One option that might be doable - FMLA (Family Medical Leave Act) should be available to anyone, since it is a federal act. This could allow up to 12 weeks of family leave. It is unpaid, HOWEVER, you say there is enough money to pay for outside help. You and they can draw up legal paperwork that would at least pay the 'going rate' for outside caregivers (this paperwork, done properly, would be needed later in the event Medicaid is needed.) I do not know if this is a once/year thing or if it can be used again later the same year, but with 3 of you, that would cover 36 weeks - still 16 weeks to cover, but vacations and holidays might help there. Just suggesting it as an option. It would allow you all to keep you jobs but care for mom.
One last thing - sure babies cannot make phone calls, but would ANYONE WHO IS SANE leave a baby in a crib all day, under the premise that they are bedridden and cannot get into trouble or mischief?
Thanks to all who responded. You all have great advice and I really appreciate it. I live over 5 hours away. I do go 2 times a week. I have a few health issues of my own so going anymore than that is difficult. But like I said I thank you all for your input and thoughts. I will try again to have that family meeting. Maybe this time it will make a difference.
Kitty06 You have gotte a wide range of responses, here. As I said in the earlier post; all the information is not in your post to make wise decision. I am sorry to see some have attacked you ( As you see some of us have people who don’t want to be intimately involved, yet want to control the situation, making our caregiving more stressful). I do not live in fear, and feel the need to be in total control. That being said I would take all the precautions to prevent a fire, and if she is truly bedridden she will not start one. I would not let an unlikely physical hazard override the emotional well-being of my mother not my siblings. As people have speculated it may be they want the money. I think there may be other reasons. Perhaps, they feel a responsibility to be the caregivers for her and they see her autonomy as a high priority for your mother. This is why I advised you all to talk. If there is tension between you and your sisters, agree on someone to be a facilitator, so everyone can be heard. With my parents, I have gone both extremes in some people’s minds, but my siblings are in agreement. That is why I suggested reading On Being Mortal. Each situation is unique, and you have to live with the decisions you make. As some have pointed out there are many critics along this path. I wish for you a path that brings peace to you and your family.
This scenario is clearly not working. Perhaps the town's social worker needs to come in for an evaluation, since the sisters may be reluctant to believe your information that you may suggest.
If Mom is considered competent to make her own decisions I assume she is competent to push the button on a medical alert device. Just make sure she can't get it off herself. I wear mine on my wrist like a wrist watch, I agree with everyone no one in this Mom's situation should be left alone for long hours. Is this really the Mom's decision or does sis not want to spend the money. if sis has a low paying job and Mom just has SS it must be hard to make ends meet. They probably would qualify for some Public Health help but that would not be all day. I think we need more background on what is really happening here.
I suggested the fire department (as opposed to APS) because, at least in NYC, firefighters are sensitive, handsome and VERY good at talking to old ladies. Seriously, if you can get in touch with your local fire department and ask them to have some of the "boys" come out to explain to your LO that she's putting THEM in danger, it might be useful.
Kitty, I agree with you, your mom is at high risk.
For those touting "elder rights", this woman is completely dependent on others for her care. IF she was self sufficient then I'd say let her do as she pleases. But she can't do anything so she needs care AND protection, even if she disagrees. She is not making rational decisions. It's the responsibility of the family to *override* her poor choices.
You could hire a caregiver to be in the other room and check on her hourly. Granted it seems to be a waste but at least someone would be there. So what that she doesn't want anyone in the house. What's she going to do, get up and throw them out?
Seniors like this need to be saved from their bad choices.
If the home was inspected by either the Fire Department or APS, they would both declare it an unfit situation and demand that your mom has supervision.
It probably will fall on you to change the situation, since your sisters won't cooperate.
You could tell your mom that either she allow c/g's in the home or you'll need to contact the FD and APS. Then she may wind up in a facility.
Yeah I take your point, CM, but at least the fit athletic people had a fighting chance. Either way, I'm not going to be the one to leave my mom at risk of death by fire (especially in this dry tinderbox wildfire region), so that was my personal criteria, along with her fall risk.
But Dorianne, the whole world is teeming with people who couldn't get out of a building in a hurry. Not to mention the number of buildings that even fit athletic people couldn't get out of in time were they to catch fire. It just can't be a deciding criterion for whether or not you can be left alone for a given period.
Yeah....it's great that this mom is competent enough to make her own decisions, but what if there was a fire?
I thought my mom would be fine left alone, too. Then one morning the fire alarm went off. It was a false alarm, but it was good wake up call to me. My mother would not be able to get out of the apartment, let alone down 6 flights of stairs, on her own. She can't even dial a phone anymore. If there were a fire, she would die, helpless in bed.
I'm a little shocked by some of the answers. I am all about seniors making their own choices, but sometimes you have to intervene. This woman is (1) 89 and (2) bedridden. To be left alone all day, I cannot imagine. My mom is 91, has dementia, and is confined to a wheelchair. VERY occasional I will go to get us a carryout or ice cream. I do not go more than 2 miles. I first make sure she has used the bathroom if needed, get her situated in her chair with her TV program, then hightail it out and back within 30 minutes at the latest, all the while hoping and assuming there will be no fire or other danger in that short time frame. All day alone? To me that constitutes neglect. I would caution coming up with some solution before a neighbor or someone gets wind of the situation, calls the police, and then everyone will be in trouble.
Maybe you could go over and care for her so your sisters can leave the house. Maybe you could meet with the home health care aides and screen them yourselves and pay for them. Rather than reporting your sisters you could contribute to caring for her. I agree with the family meeting idea. As a caregiver, it is very difficult and people have so much advice without actually helping. Have you offered to care for your mom so your sisters could get away. Be part of the solution not just a critic. Sorry, I just got so tired of well meaning advice but no one actually volunteers to do anything. Do you live far? Ask, how can you help.
Read On Being Mortal by Atual Gawande. A doctor may say she is 24/7 care because he doesn't want a law suit. And APS too has to worry about lawsuits. You have not provided a clear picture to say she is unsafe, and she is considered competent. Has she had skin breakdown? Is she losing weight? Does she voice feeling afraid or feeling hopelessness? Does she lay in dirty diapers or linens? Does she have access to fluids and food? Would her being forced by an outside agency to go to a LTC facility be detrimental to here mental health? If mother is definitely competent, isn't it up to her to whether she accepts the risks?, as Countrymouse asked. There are many people (not just elderly) who live in what we may consider less than ideal situations, and are permitted to because they are considered competent. From what I gathered the optimal would be have a home companion. That being said, your mom's total well-being should be the deciding factor, not your fears, nor what you see as your sister's neglect. From personal experience you can use the agencies to force a decision to move her to a facility, or have you as the caregiver, but then you have to share in your mom's misery and anger toward you, even though you thought you were doing best by her. Clear honest communication between all of you is the first step.
Why is it that when we get old, we don’t have a say in our life. I for one would be like your Mom. I would rather die in my home than go to a Care facility...at all costs! That is my choice.
From the sounds of it, If you were to ask her Dr., about her care level, more than likely the Dr would tell you 24/7 oversight. May want to check that first before you move into calling Protective Services. Then you have something to base your call on. My mother needs 24/7 because she has mild dementia, Parkinsons and is legally blind. She likes to lie in bed a lot during the day and tells everyone to go on and do whatever they need to do- that she will be fine. However, if there were any emergency she couldn't even dial the phone much less get to it. I have intercoms in my home and have a sitter when I am not around. Mother 'thinks' she is sending the sitter home but she is in the next room. Best luck to you
I think Kitty thinks that there should always be someone else in the house, and her sisters should comply with that.
You volunteering, Kitty?
I think it also depends to some extent how long mother is left alone in the house. All sorts of people do live alone who you wouldn't have thought it was ideal for - type 1 diabetics, who might fall into a coma; blind people; deaf people who wouldn't hear a standard smoke alarm; wheelchair users... all sorts.
If mother is definitely competent, isn't it up to her to whether she accepts the risks?
I must be missing something. She lives with the sister, so I'm assuming the sister comes home to a mom who hasn't been to the toilet (all day?) Some kind of aide is needed, I'd think. If I were mom, I'd be more than okay with an aide at least occasionally helping me with that.
Also please keep in mind that APS could very well take over the situation and remove her from the home or force around the clock care which could get your sister in trouble for neglect even though it is your mother's decision because she is creating a situation where she is a danger to herself ...unfortunately no as adult children we may be forced to make decisions for our elderly parents for their own safety because even tho they may be considered competent they are not making safe rational decisions so please be prepared for that after APS is brought into the picture ...they are legally bound to take control of situation if they feel necessary . ..if she lives with your sister that is sending false reality thinking she is being watched around the clock
Yes, my knee jerk response to this was Adult Protective Services. And perhaps a second medical opinion. Your Mother's choices are not safe or rational. At least those would give you peace of mind. Again, think bedsores, nutrition and toileting. Basic needs.
Ah. So it is Mother who is resistant to get the help we all think she needs. Your sisters are not preventing a safer care arrangement. All your sisters can do is decide about their own actions, and they are doing that. They do not agree to stay with Mother 24/7. That is their right. If Mother is living in Sister's home, Sister could evict her. Then Mother would be forced to make some decisions about her care.
For my own peace of mind, I would call APS. Depending on what they see as self-neglect and how that applies to competent adults, they may not be able to do anything. But at least you will have tried.
We love good endings because they are so few and far between for a lot of us.
I'm glad that you have home health helping Mom. If this is being paid for by Medicare, please be aware that this is probably temporary help. However, if Mom is indigent, then you can probably get a home health aide on a continuing basis through Medicaid. Also, if Mom's a widow and Dad was a veteran, check out the VA for help.
You say "She is basically bedridden." and "Can’t walk at all." yet she is home "All day with no help." What does "basically" mean?
Does she have a bedside commode to use and can she get to it safely herself? If not, how can she go all day without using a bathroom? Is she wearing depends? If so, would someone leave a baby or toddler in soiled diapers all day? Good lord, think of what havoc that could do!!! What does she eat/drink all day and how does she get access to it? Others asked about bedsores - can she shift her position in bed to prevent this?
Personally I agree with you that this is not an ideal situation. You initially say "Both siblings feel this is ok.", but you also later say this is what your mother wants too (no one coming in.)
You are "told she has a phone." Who said this? Both sisters or sisters and mom or just mom? Is this a portable or wired? If it is portable, what happens if she drops it or the battery dies? If wired (especially if it is an cable/internet phone), service can get interrupted (includes the portable too) and unless the cable number is registered with emergency services, if she were unable to speak they would NOT be able to locate her! Medical emergencies can impede mom's ability to place a call for help.
If she is in bed all day, more than likely she naps or dozes off - smoke inhalation and even worse carbon monoxide can incapacitate quickly without waking you up! If she were left alone for quick trips, ok. All day? No. I presume this is the case because your sisters work. Are you currently also working? Can you or either of them provide any assistance by being there for at least some of the time?
Agreed that if someone is considered 'competent', there probably is not much that can be done. Bringing in APS, if they would even go, might bring about some nasty consequences. It might be better to explore any and all other options first. The question I would pose here: is she really competent?
One can seem to be very competent, even with earlier stages of dementia, but it does not mean that they can make appropriate decisions. Our mother was still living alone when dementia started. We were proactive as needed (take the car away, locked pill dispenser, took over finances, etc.) We then started with 3 days/week one hour visit from an aide, mainly as a check on her (we also had some cameras, but there were only two inside and could not see everything!) and to see that she took her medications. The intent was to keep her in her own home as long as possible. That was upped to 5 days/week, but this plan didn't last long when she (like your mother) didn't want them there and refused to let them in after a few months.
My brothers offered to take her in. Nope. She's fine. She's independent. She can cook. Right. Food going bad in fridge and freezer because she would only eat frozen dinners, cereal and packaged foods (basically crap!) THAT is not cooking. If you brought up AL, same response - fine, independent, cook. Add to that, she would NEVER live in one of those places (yet for years she went to the 'open houses' with free lunch to 'check them out'.) I brought up what would you do if you fell and could not get to the phone (portable was missing for a while, long enough that battery was dead.) Her response was that she doesn't go downstairs. I said I never mentioned the stairs mom, but WRONG ANSWER mom, we can see you DO go downstairs on the camera recordings! The dryer vent had not been cleaned in YEARS, so it was a fire waiting to happen! My brother replaced it all with better venting and found the phone while down there (where we NEVER go!) Her rationale about falling and needing help? I'll get help. Sure mom. Brain waves. Yelling when no one can hear you. Wave that magic wand. Whatever. You will NOT be able to get help. We started making plans to have her move.
Granted our mother was still mobile (she only recently started using a walker, and has had several tumbles in the year+ she's been in MC), but still.... Her hearing was bad and she often would forget to change the battery (no hearing in one ear, limited in the other.) How would she hear the alarms? She often couldn't even hear the phone!! One brother put in a flasher for the phone - she unplugged it.
So, literally days before the "move" didn't she injure her leg (couldn't tell anyone how when asked) and never sought care for it or even called one of us!! It festered for some days before my brother came up for the move. She ended up with cellulitis, which is a serious infection, even more so for someone her age!
For you Kitty06:
*Make a list of dangers.
*Consult with Fire Department about what concerns they might have in general for the elderly and add those to your list (you don't have to give them any details at this time.)
*What are the living conditions - apartment, home, first or second floor or higher? Add those concerns to your list (even if FD gets a fire call, they do not know who is home or where in the home they might be! As awesome as the FD is, they do not have magical powers!!!)
*Then have a family meeting (maybe with sisters first, to make them see some rationale in this.)
- What are the contingency plans?
- Are sisters (or you) close enough at work to at least do a lunchtime check?
- Are there any other family members or friends/neighbors who could check in or sit with her for a while "just to chat." or see if she needs anything?
One option that might be doable - FMLA (Family Medical Leave Act) should be available to anyone, since it is a federal act. This could allow up to 12 weeks of family leave. It is unpaid, HOWEVER, you say there is enough money to pay for outside help. You and they can draw up legal paperwork that would at least pay the 'going rate' for outside caregivers (this paperwork, done properly, would be needed later in the event Medicaid is needed.) I do not know if this is a once/year thing or if it can be used again later the same year, but with 3 of you, that would cover 36 weeks - still 16 weeks to cover, but vacations and holidays might help there. Just suggesting it as an option. It would allow you all to keep you jobs but care for mom.
One last thing - sure babies cannot make phone calls, but would ANYONE WHO IS SANE leave a baby in a crib all day, under the premise that they are bedridden and cannot get into trouble or mischief?
You have gotte a wide range of responses, here. As I said in the earlier post; all the information is not in your post to make wise decision. I am sorry to see some have attacked you ( As you see some of us have people who don’t want to be intimately involved, yet want to control the situation, making our caregiving more stressful). I do not live in fear, and feel the need to be in total control. That being said I would take all the precautions to prevent a fire, and if she is truly bedridden she will not start one. I would not let an unlikely physical hazard override the emotional well-being of my mother not my siblings. As people have speculated it may be they want the money. I think there may be other reasons. Perhaps, they feel a responsibility to be the caregivers for her and they see her autonomy as a high priority for your mother. This is why I advised you all to talk. If there is tension between you and your sisters, agree on someone to be a facilitator, so everyone can be heard. With my parents, I have gone both extremes in some people’s minds, but my siblings are in agreement. That is why I suggested reading On Being Mortal. Each situation is unique, and you have to live with the decisions you make. As some have pointed out there are many critics along this path. I wish for you a path that brings peace to you and your family.
I agree with everyone no one in this Mom's situation should be left alone for long hours.
Is this really the Mom's decision or does sis not want to spend the money. if sis has a low paying job and Mom just has SS it must be hard to make ends meet. They probably would qualify for some Public Health help but that would not be all day.
I think we need more background on what is really happening here.
I agree with you, your mom is at high risk.
For those touting "elder rights", this woman is completely dependent on others for her care. IF she was self sufficient then I'd say let her do as she pleases. But she can't do anything so she needs care AND protection, even if she disagrees. She is not making rational decisions. It's the responsibility of the family to *override* her poor choices.
You could hire a caregiver to be in the other room and check on her hourly. Granted it seems to be a waste but at least someone would be there.
So what that she doesn't want anyone in the house. What's she going to do, get up and throw them out?
Seniors like this need to be saved from their bad choices.
If the home was inspected by either the Fire Department or APS, they would both declare it an unfit situation and demand that your mom has supervision.
It probably will fall on you to change the situation, since your sisters won't cooperate.
You could tell your mom that either she allow c/g's in the home or you'll need to contact the FD and APS. Then she may wind up in a facility.
Have you had your mom tested for dementia?
I thought my mom would be fine left alone, too. Then one morning the fire alarm went off. It was a false alarm, but it was good wake up call to me. My mother would not be able to get out of the apartment, let alone down 6 flights of stairs, on her own. She can't even dial a phone anymore. If there were a fire, she would die, helpless in bed.
That put an end to my free and easy ways!
Is she stable on her feet or is she unsteady?
You volunteering, Kitty?
I think it also depends to some extent how long mother is left alone in the house. All sorts of people do live alone who you wouldn't have thought it was ideal for - type 1 diabetics, who might fall into a coma; blind people; deaf people who wouldn't hear a standard smoke alarm; wheelchair users... all sorts.
If mother is definitely competent, isn't it up to her to whether she accepts the risks?
And perhaps a second medical opinion. Your Mother's choices are not safe or rational. At least those would give you peace of mind.
Again, think bedsores, nutrition and toileting. Basic needs.
For my own peace of mind, I would call APS. Depending on what they see as self-neglect and how that applies to competent adults, they may not be able to do anything. But at least you will have tried.