How Do You Know When It's Time...?
I'm looking for answers/advice for what is the most human and loving thing to do for my mother.
My almost 90-year-old mother has Alzheimer's, but it's progression has been slowed by medication. It's affected her short term memory (can't remember to take medication, for example) and now seems to be affecting her motor skills (frequent falls, FEAR of falling/pain, and near inability to stand from a seated position). She also has problems with hygiene, incontinence and depression. Although she can walk, using her walker...she whimpers and moans with each and every step...although she claims to feel no pain while walking. She does admit to extreme pain upon rising from a seated position. (Yes, she was hospitalized recently and thoroughly checked for any broken bones or fractures, and has none.)
My sister is Mom's primary care giver. They live practically next door to one another. I live 45 minutes away and visit weekly for overnight stays.
I worry about Mom living "alone", even though my sister stops in at least once per day. I am worried about my mother's safety and well-being. My sister is adamant about Mother staying in her own home as long as possible, and has begun to enlist help from home-care professionals. I think what my sister has done is commendable, and I know she loves Mom and believes she is doing what is best. But I believe that Mother truly needs 24 hour care, for her safety....and for her mental stimulation. (Her life is now basically just sitting in one chair all day long, with occasional...and traumatic...trips to the bathroom or "potty chair".)
Here is the problem: My sister's plan was for her family (husband, child and her) to sell their home, buy a bigger home, and move our mother in with them. Great plan...but it should have been implemented a couple of years ago. Now, in my opinion, time is running out for that to be a viable option. My sister does NOT think that Mom needs 24 hour care. I don't know if that is denial on my sister's part...or an unwillingness to move in with Mom (which I completely understand.)
I am NOT criticizing my sister's care-taking, as she has done much more for mom than have I (or our brother, who lives outside of the U.S.)I do NOT expect my sister to assume the responsibility of Mom's care, even though she already pretty much has. I want to participate...and I am. But it is not feasible for me to move in with Mom. (Or, even if I did...I could not be there 24 hours a day, due to my work and my own family.)
I am starting to believe that the safest thing (and possibly the best thing for her mental stimulation) would be for Mom to move into a GOOD nursing-care facility. One that is close to my sister, so she could visit daily, if she wants...and so that I could visit frequently. Mom doesn't like that idea, when I've glossed over it in conversation...but Mom also thinks she can pay all her own bills, etc., which she absolutely cannot.
So...how do I know what to do? And how do I deal with my sister, who is starting to think that I am the enemy, for even entertaining the idea that Mom would be better served in a facility that could care for her properly?
For those of you kind enough to answer my question, please keep in mind these things that worry me: Mom's loneliness and depression, Mom's hygiene and constant urinary tract infections, Mom's frequent falling, Mom's pain, and Mom's mental confusion. Also, please note that Mom is VERY social (normally}. Also, please note that we have tried an emergency alert bracelet, and Mom either doesn't "get it" or refuses to use it...because she "doesn't want to bother anyone" (so, she sometimes has laid on the floor for hours, before someone has found her).
Does my mother sound like someone who can be left alone overnight or for several hours during the day? Is it really possible that Mom could improve significantly with home health care? Or does it sound like Mom is a good candidate for a nursing care facility?
And, aside from all of these concerns....could my sister and I actually be held responsible for some sort of "elder abuse", if we fail to move Mom to a safer environment?
Since my Mom and sister have a MUCH closer relationship than my Mom and I (although I do love and respect her)...I feel it is up to me to have the level head and do the hard thing (while my sister thinks I am evil incarnate for even suggesting that we "dump mother somewhere"). >sigh<
Thanks in advance for any responses.
How Do You Know When It's Time...?
I'm looking for answers/advice for what is the most human and loving thing to do for my mother.
My almost 90-year-old mother has Alzheimer's, but it's progression has been slowed by medication. It's affected her short term memory (can't remember to take medication, for example) and now seems to be affecting her motor skills (frequent falls, FEAR of falling/pain, and near inability to stand from a seated position). She also has problems with hygiene, incontinence and depression. Although she can walk, using her walker...she whimpers and moans with each and every step...although she claims to feel no pain while walking. She does admit to extreme pain upon rising from a seated position. (Yes, she was hospitalized recently and thoroughly checked for any broken bones or fractures, and has none.)
My sister is Mom's primary care giver. They live practically next door to one another. I live 45 minutes away and visit weekly for overnight stays.
I worry about Mom living "alone", even though my sister stops in at least once per day. I am worried about my mother's safety and well-being. My sister is adamant about Mother staying in her own home as long as possible, and has begun to enlist help from home-care professionals. I think what my sister has done is commendable, and I know she loves Mom and believes she is doing what is best. But I believe that Mother truly needs 24 hour care, for her safety....and for her mental stimulation. (Her life is now basically just sitting in one chair all day long, with occasional...and traumatic...trips to the bathroom or "potty chair".)
Here is the problem: My sister's plan was for her family (husband, child and her) to sell their home, buy a bigger home, and move our mother in with them. Great plan...but it should have been implemented a couple of years ago. Now, in my opinion, time is running out for that to be a viable option. My sister does NOT think that Mom needs 24 hour care. I don't know if that is denial on my sister's part...or an unwillingness to move in with Mom (which I completely understand.)
I am NOT criticizing my sister's care-taking, as she has done much more for mom than have I (or our brother, who lives outside of the U.S.)I do NOT expect my sister to assume the responsibility of Mom's care, even though she already pretty much has. I want to participate...and I am. But it is not feasible for me to move in with Mom. (Or, even if I did...I could not be there 24 hours a day, due to my work and my own family.)
I am starting to believe that the safest thing (and possibly the best thing for her mental stimulation) would be for Mom to move into a GOOD nursing-care facility. One that is close to my sister, so she could visit daily, if she wants...and so that I could visit frequently. Mom doesn't like that idea, when I've glossed over it in conversation...but Mom also thinks she can pay all her own bills, etc., which she absolutely cannot.
So...how do I know what to do? And how do I deal with my sister, who is starting to think that I am the enemy, for even entertaining the idea that Mom would be better served in a facility that could care for her properly?
For those of you kind enough to answer my question, please keep in mind these things that worry me: Mom's loneliness and depression, Mom's hygiene and constant urinary tract infections, Mom's frequent falling, Mom's pain, and Mom's mental confusion. Also, please note that Mom is VERY social (normally}. Also, please note that we have tried an emergency alert bracelet, and Mom either doesn't "get it" or refuses to use it...because she "doesn't want to bother anyone" (so, she sometimes has laid on the floor for hours, before someone has found her).
Does my mother sound like someone who can be left alone overnight or for several hours during the day? Is it really possible that Mom could improve significantly with home health care? Or does it sound like Mom is a good candidate for a nursing care facility?
And, aside from all of these concerns....could my sister and I actually be held responsible for some sort of "elder abuse", if we fail to move Mom to a safer environment?
Since my Mom and sister have a MUCH closer relationship than my Mom and I (although I do love and respect her)...I feel it is up to me to have the level head and do the hard thing (while my sister thinks I am evil incarnate for even suggesting that we "dump mother somewhere"). >sigh<
Thanks in advance for any responses.
There are some things that can be done in the home to non-invasively "monitor" what's going on and help her stay intouch with other family. I'm with a company in the Phoenix area that helps people in your situation. I'm not sure where you are at but if you would like, I could help you find someone in your area that handles the same things we do.
We have a video on YouTube to give you an idea of what's capable. http://www.youtube.com/watch?v=vWjEddP--ng One thing that's not shown in this video is the capability of the system to now Skype with family. They don't have to know anything other than to press a button on the screen to start or answer a call. I'm not trying to sell anything to you. We are a family owned and operated company and want to do things that make a difference. We've had our own personal stories of family care that led us in this direction. There's a lot of new technology out there that can help people in your situation have some peace of mind.
There are some things that can be done in the home to non-invasively "monitor" what's going on and help her stay intouch with other family. I'm with a company in the Phoenix area that helps people in your situation. I'm not sure where you are at but if you would like, I could help you find someone in your area that handles the same things we do.
We have a video on YouTube to give you an idea of what's capable. http://www.youtube.com/watch?v=vWjEddP--ng One thing that's not shown in this video is the capability of the system to now Skype with family. They don't have to know anything other than to press a button on the screen to start or answer a call. I'm not trying to sell anything to you. We are a family owned and operated company and want to do things that make a difference. We've had our own personal stories of family care that led us in this direction. There's a lot of new technology out there that can help people in your situation have some peace of mind.
Your Mom is in no condition to be on her own 24 hrs a day. She should have a Caregiver for at least the evenings, since your sister lives next door. I believe you are correct in wanting better care for your Mom. In her present condition she could benefit from a nursing home.
Your Mom is in no condition to be on her own 24 hrs a day. She should have a Caregiver for at least the evenings, since your sister lives next door. I believe you are correct in wanting better care for your Mom. In her present condition she could benefit from a nursing home.
It doesn't sound like she is safe to be alone. However, unless she has been declared incompetent (and just having an Alzheimer's diagnosis doesn't do it) she still has the right to refuse to leave her home.
I think you have very good cause to be concerned. But it sounds like you keep running into resistance when trying to talk to your sister. I think you are going to have been luck if you start with the home health angle. If you keep insisting on your mom leaving her home, your mom and sister are just going to hear the word "nursing home" and not listen to the reasons you are concerned. Does that make sense?
If you come from the approach that you want to keep your mom safe and in her home as long as possible, they may be more willing to listen. And having some help for your mom is going to ultimately also help your sister out.
I recommend trying your local Area Agency on Aging to start. They often have different programs available, everything from home delivered meals (which also means someone checking on her every day), housekeeping assistance, bathing assistance, etc. They often have case managers available that can help explain other programs that your mom might qualify for. I don't know what the medicaid plan in your mom's state covers, but here is AZ we have a long term Medicaid plan that when a person qualifies (financially and medically), they help also with home services.
You can also check out the site BenefitsCheckup. This site also can help find programs available in your mom's area.
Is there a local Adult Daybreak program in your mom's area? Daybreak is often a great program setup for adults who can't be left alone. the program has daily activities, sometimes including outings or shopping trips. It would be a great way to help your mom have some socialization. Would your sister and mom be willing to maybe consider Assisted Living? An Assisted Living facility often is in a home like setting for those that require some assistance, but not at a nursing home level. There are some larger assisted living facilities that are set up so each person has their own little apartment, but everyone goes to the dining room for meals and there is staff 24 hours a day to assist with everything from dressing, medications, using bathroom, bathing, safety checks, etc.
If nothing else, and if/when you truly feel your mom is not safe, you can always make an anonymous call to adult protective services. APS can investigate and sometimes just having APS involved will make a person more accepting of help.
It doesn't sound like she is safe to be alone. However, unless she has been declared incompetent (and just having an Alzheimer's diagnosis doesn't do it) she still has the right to refuse to leave her home.
I think you have very good cause to be concerned. But it sounds like you keep running into resistance when trying to talk to your sister. I think you are going to have been luck if you start with the home health angle. If you keep insisting on your mom leaving her home, your mom and sister are just going to hear the word "nursing home" and not listen to the reasons you are concerned. Does that make sense?
If you come from the approach that you want to keep your mom safe and in her home as long as possible, they may be more willing to listen. And having some help for your mom is going to ultimately also help your sister out.
I recommend trying your local Area Agency on Aging to start. They often have different programs available, everything from home delivered meals (which also means someone checking on her every day), housekeeping assistance, bathing assistance, etc. They often have case managers available that can help explain other programs that your mom might qualify for. I don't know what the medicaid plan in your mom's state covers, but here is AZ we have a long term Medicaid plan that when a person qualifies (financially and medically), they help also with home services.
You can also check out the site BenefitsCheckup. This site also can help find programs available in your mom's area.
Is there a local Adult Daybreak program in your mom's area? Daybreak is often a great program setup for adults who can't be left alone. the program has daily activities, sometimes including outings or shopping trips. It would be a great way to help your mom have some socialization. Would your sister and mom be willing to maybe consider Assisted Living? An Assisted Living facility often is in a home like setting for those that require some assistance, but not at a nursing home level. There are some larger assisted living facilities that are set up so each person has their own little apartment, but everyone goes to the dining room for meals and there is staff 24 hours a day to assist with everything from dressing, medications, using bathroom, bathing, safety checks, etc.
If nothing else, and if/when you truly feel your mom is not safe, you can always make an anonymous call to adult protective services. APS can investigate and sometimes just having APS involved will make a person more accepting of help.
thank you to everyone who has replied. Ranae...your response was particularly thoughtful. I appreciate it.
You have hit the nail on the head about the resistance I am getting from my sister. What's a bit strange is that my mother has actually brought up the subject of "going somewhere" to me and to my friend, on separate occassions...when each of us was alone with Mom. (Like it was something that she might not mind doing) Then Mom followed that up with "but (insert my sister's name) wants me to stay in my home." At times, I feel like Mom herself would feel safer & more secure living in a place where she would be cared for properly...but I'm starting to feel like maybe she doesn't want to upset or disappoint my sister. But then, when I point-blank ask Mom if she would like to live somewhere else, she always says "Oh, no. I want ti live in my own home." Of course, I realize that Mom is probably confused and isn't the best judge of what she wants or needs, a lot of the time. I just find it odd that she would bring up the subject unprovoked like that. maybe I'm overreacting, but it makes me worried that Mom is suffering needlessly, just so my sister can stay in denial.
We are receiving home care services. (physical therapy, nurse visits, senior companion visits, and someone is supposed to help with bathing, but that hasn't seemed to be happening consistently yet) I was surprised at all the resources that are available. I think the Senior "daycare" is a great idea. I will look into that further.
I agree that "insisting" that Mom go into a nursing facility is NOT going to get me anywhere. My sister AND my mom have to think that it is THEIR idea. That's for sure. Such a shame. My sister & mom are so tied to one another emotionally that my sister can't be objective and see things with clarity. And she is simply not ready to face reality yet. I don't know if she ever will be.
I just know that I will have to live with whatever action I take...or don't take...for the rest of my life. I want to do what's right. And that is sometimes hard to see clearly. I know that this is still my mother's life. And it's a horrible position to be in, to have to make someone else's life choices. But I'm sure I'm not telling anyone here what they don't already know.
Anyway...thanks for the input, all. Trust me...I'm all ears and welcome any and all advice.
thank you to everyone who has replied. Ranae...your response was particularly thoughtful. I appreciate it.
You have hit the nail on the head about the resistance I am getting from my sister. What's a bit strange is that my mother has actually brought up the subject of "going somewhere" to me and to my friend, on separate occassions...when each of us was alone with Mom. (Like it was something that she might not mind doing) Then Mom followed that up with "but (insert my sister's name) wants me to stay in my home." At times, I feel like Mom herself would feel safer & more secure living in a place where she would be cared for properly...but I'm starting to feel like maybe she doesn't want to upset or disappoint my sister. But then, when I point-blank ask Mom if she would like to live somewhere else, she always says "Oh, no. I want ti live in my own home." Of course, I realize that Mom is probably confused and isn't the best judge of what she wants or needs, a lot of the time. I just find it odd that she would bring up the subject unprovoked like that. maybe I'm overreacting, but it makes me worried that Mom is suffering needlessly, just so my sister can stay in denial.
We are receiving home care services. (physical therapy, nurse visits, senior companion visits, and someone is supposed to help with bathing, but that hasn't seemed to be happening consistently yet) I was surprised at all the resources that are available. I think the Senior "daycare" is a great idea. I will look into that further.
I agree that "insisting" that Mom go into a nursing facility is NOT going to get me anywhere. My sister AND my mom have to think that it is THEIR idea. That's for sure. Such a shame. My sister & mom are so tied to one another emotionally that my sister can't be objective and see things with clarity. And she is simply not ready to face reality yet. I don't know if she ever will be.
I just know that I will have to live with whatever action I take...or don't take...for the rest of my life. I want to do what's right. And that is sometimes hard to see clearly. I know that this is still my mother's life. And it's a horrible position to be in, to have to make someone else's life choices. But I'm sure I'm not telling anyone here what they don't already know.
Anyway...thanks for the input, all. Trust me...I'm all ears and welcome any and all advice.
Your mother is in danger. She should not be left alone. Being alone, and having alzheimers, she probably lives in fear of the dark, dark shadows, the windows, rugs that are dark that look like "she will fall through", and maybe her own reflection (does not recognize herself and thinks it is a stranger). She is probably getting a lot of bladder infections by wiping herself incorrectly, which can become septic. I know this from firsthand knowledge, as my mother had a caretaker who let her wipe herself. She almost died twice, and that is when I brought my mother home to live with me. I also had a family totally in denial of the alzheimers despite the fact that my mothers identical twin sister died of it 7 years previously. They kept saying, "oh, she's just getting old". I lived out of state from her and only got there once every three months, and staying with her, I saw the decline, where no one else wanted to see it or help. Everyone had their own lives. I finally took her to a geriatric specialist, who specializes in diseases of the elderly. The very first visit, he diagnosed alzheimers, and I had him write out the diagnosis to SHOW to my brothers and sister, who were still in denial. She was prescribed exelon patch, which helps to slow down the progression. After she was hospitalized the second time, I brought her to live with me. I suggest you schedule an appointment with a geriatric specialist, arrange it so All your siblings be present, and ask that they all agree to follow the doctor's orders, which I will believe that your mother either move in with one of the siblings for total 24 hour care or to be placed in a memory center. Make sure your check out the complaints made against the facilities with the local health department. It's public knowledge, and each nursing facility is supposed to have to available for review. It shows what complaint and remedies made to resolve the complaint. Also pay attention to what kind of complaints, i.e., deaths, neglect, lots of bedsore complaints, which show it is a poor health care facility. Don't let your sister make the decision. Let the doctor make the decision. She is obviously not looking out for mom's best interest if she is leaving her there in the home alone. Your mom needs stimulation, brain stimulation. Sitting in a chair all day is not stimulation. She needs to feel safe. Sitting in a chair, alone, she is probably not feeling safe at all, and is probably terrified when she knows one of you is leaving. She has told you herself, without being prompted, that she wants to go with you, LISTEN TO HER. SHE'S TRYING THE BEST SHE CAN TO TELL YOU SHE IS AFRAID TO BE ALONE. Show my response to your sister. I've been there, done that. My mom is doing so much better, health-wise, and AD-wise. As her disease progresses, she now is afraid when I even leave the room, even though she can see me in the kitchen. That is a part of the disease. Every person that has AD is different. If you're with mom, you'll be able to see the little behaviors to know what she is feeling, because she may not be able to relate to you what is wrong. If none of your siblings can take mom in, then it would be better for your mom's safety to be in a good memory facility. Good caretakers at the memory centers know how to take care of dementia and alzheimers patients. I know this is long, but I fear for your mom and her care. If she has fallen numerous times, it is time to have 24 hour care. If she hurts when she stands up, it could be because she fell and no one was there to see it, or she could have a bladder or kidney infection. Please take my advice. I let my siblings ignore it, and my mom paid for it. She could have been on the AD medications years earlier. i am just glad I took her to the doctor. Also, has your mom designated anyone as power of attorney? If she is still able to reason, you need to get your legal documents completed, what means of medical help she wants if she becomes unable to make decisions herself (which sounds like she may be past that time). You may have to go to court to become her conservator/legal guardian, who will take care of all her bills, checking account, income, and all care for her. I had to do that, and I am glad I did before my mom got to the point that she could still sign her name. She can't read or sign her name at all now. Good luck with everything. My prayers are with you.
Your mother is in danger. She should not be left alone. Being alone, and having alzheimers, she probably lives in fear of the dark, dark shadows, the windows, rugs that are dark that look like "she will fall through", and maybe her own reflection (does not recognize herself and thinks it is a stranger). She is probably getting a lot of bladder infections by wiping herself incorrectly, which can become septic. I know this from firsthand knowledge, as my mother had a caretaker who let her wipe herself. She almost died twice, and that is when I brought my mother home to live with me. I also had a family totally in denial of the alzheimers despite the fact that my mothers identical twin sister died of it 7 years previously. They kept saying, "oh, she's just getting old". I lived out of state from her and only got there once every three months, and staying with her, I saw the decline, where no one else wanted to see it or help. Everyone had their own lives. I finally took her to a geriatric specialist, who specializes in diseases of the elderly. The very first visit, he diagnosed alzheimers, and I had him write out the diagnosis to SHOW to my brothers and sister, who were still in denial. She was prescribed exelon patch, which helps to slow down the progression. After she was hospitalized the second time, I brought her to live with me. I suggest you schedule an appointment with a geriatric specialist, arrange it so All your siblings be present, and ask that they all agree to follow the doctor's orders, which I will believe that your mother either move in with one of the siblings for total 24 hour care or to be placed in a memory center. Make sure your check out the complaints made against the facilities with the local health department. It's public knowledge, and each nursing facility is supposed to have to available for review. It shows what complaint and remedies made to resolve the complaint. Also pay attention to what kind of complaints, i.e., deaths, neglect, lots of bedsore complaints, which show it is a poor health care facility. Don't let your sister make the decision. Let the doctor make the decision. She is obviously not looking out for mom's best interest if she is leaving her there in the home alone. Your mom needs stimulation, brain stimulation. Sitting in a chair all day is not stimulation. She needs to feel safe. Sitting in a chair, alone, she is probably not feeling safe at all, and is probably terrified when she knows one of you is leaving. She has told you herself, without being prompted, that she wants to go with you, LISTEN TO HER. SHE'S TRYING THE BEST SHE CAN TO TELL YOU SHE IS AFRAID TO BE ALONE. Show my response to your sister. I've been there, done that. My mom is doing so much better, health-wise, and AD-wise. As her disease progresses, she now is afraid when I even leave the room, even though she can see me in the kitchen. That is a part of the disease. Every person that has AD is different. If you're with mom, you'll be able to see the little behaviors to know what she is feeling, because she may not be able to relate to you what is wrong. If none of your siblings can take mom in, then it would be better for your mom's safety to be in a good memory facility. Good caretakers at the memory centers know how to take care of dementia and alzheimers patients. I know this is long, but I fear for your mom and her care. If she has fallen numerous times, it is time to have 24 hour care. If she hurts when she stands up, it could be because she fell and no one was there to see it, or she could have a bladder or kidney infection. Please take my advice. I let my siblings ignore it, and my mom paid for it. She could have been on the AD medications years earlier. i am just glad I took her to the doctor. Also, has your mom designated anyone as power of attorney? If she is still able to reason, you need to get your legal documents completed, what means of medical help she wants if she becomes unable to make decisions herself (which sounds like she may be past that time). You may have to go to court to become her conservator/legal guardian, who will take care of all her bills, checking account, income, and all care for her. I had to do that, and I am glad I did before my mom got to the point that she could still sign her name. She can't read or sign her name at all now. Good luck with everything. My prayers are with you.
my god. This state is incredible.
my god. This state is incredible.
Susan...thank you so much for your reply. I didn't realize that there was a new reply, and just happened back onto this thread.
We took Mom to a neurologist on Monday, hoping for some medicinal relief of Mom's mobility issues. He was very good and very thorough...but he told us he couldn't address her mobility as ling as she was in so much severe pain. (She has had x-rays, an MRI and a cat-scan, and all they could come up with is arthritis & spinal stenosis...for which she was getting pain management shots, which helped somewhat) The neurologist sent us to an orthopedic specialist, who examined her with great care and ordered a bone scan to detect a (suspected) sacral fracture. He contacted her primary care physician and recommended hospitalization for the bone scan. From there, she was sent directly to a rehab center...where the hope is that with physical therapy, she will be able to stand up and walk again. Tonight is her second night there.
I have been with Mom a lot during this process. My sister and I got into several heated discussions, and quite frankly, I lost control. I am so angry that my sister's denial has (probably) contributed to my mother's decline and suffering. I am angry at myself for not having the courage of my convictions and forcing the issue somehow before now. I realize that these feelings are not productive. But they are feelings, I have them, and have to deal with them.
I think the situation is out of "our" control, at this point. And maybe that is good. I have been told by a nurse at the rehab that mother CANNOT go "home", unless she moves is with my sister or myself and has 24-hour care. The place she is at is not a long-term nursing home. I suppose it is possible that Mom can improve enough that she would be a candidate for an assisted living place...but I really don't know if that is going to happen. A lot depends on how good the rehab facility is and how my mother's mental condition holds up. Fortunately, I have been visiting several nursing homes all this time, trying to find a "good" place...so, hopefully, we won't be "caught with our pants down", should the time come for Mom to move somewhere.
Mom is definitely NOT happy where she is. She is often confused and sad. The first night she spent there, she cried and screamed all night (after my sister and I left)...so they moved her to a private room because she was disturbing her roommate. Tonight, she is complaining that she is all alone in a big room. The only thing that gives me comfort is that I know there are people there to watch out for her...and she was just as unhappy sitting in her chair at home. At least where she is, she is getting physical and/or occupational therapy twice a day.
My sister called me at work today, screaming at me that Mom was confused, unable to work the television remote, was crying and was even "drooling". My sister told me that she wants mother OUT of there NOW...and that if she "doesn't get my mother back", she will NEVER forgive me. She told me that "Mom was FINE" at home. I know it's not logical, but she made me feel very guilty. I was working, but she told me I needed to get over there...NOW.
I feel very lost. At this point, I don't really know if Mom CAN get better. I don't know if she's up to it. But I also know that she was going to wind up dying alone and afraid, in that stupid recliner that she was living in. I just have to remind myself that the DOCTORS made this call. And I just need to be with Mom as much as I can be, so try to alleviate her fear and encourage her as much as possible.
My sister and I will probably never have a relationship again. She hates me for "pushing the issue", and wanting Mom to not live at home alone anymore. What she really hates me for, I believe, is forcing her to face a reality that she didn't want to face. I will forever be the "bad guy". Even though all I want is for Mom to be safe and have the best quality of life that she can.
I guess, for now, I should start focusing on a long- term facility that specializes in memory care (thanks for that advice, Susan). My sister (when she will speak "rationally" about the subject) INSISTS on a place that is close to her house.. So she can easily stop in "3 times a day". I think that would be great...but I believe it is more important to find the best place possible for mother's needs, as close to my sister as possible. I will drive how ever long I need to to see Mom...since I will only be able to visit 2 or 3 times a week, at most.
This is all just so awful. At a time when a family should be able to lean on one another, we are at war. I said some hateful things to my sister...and, honestly, I meant everything I said. She has allowed her own feelings to get in the way of what is truly best for our mother. And I tolerated it...just to keep peace. I wonder, if I had been stronger, would Mom be better off right now? But then again...I doubt that I would have been able to "make" Mom do anything, without my sister on my side. But now, I will never know.
I've never asked anyone to pray for me before. But now I'd like to ask any of you reading this who do pray, to pray for me (that I receive the right guidance) and pray for my Mom (that she makes progress and is not afraid) and pray for my sister (that she can break through her denial, with grace).
Thanks for being there.
Susan...thank you so much for your reply. I didn't realize that there was a new reply, and just happened back onto this thread.
We took Mom to a neurologist on Monday, hoping for some medicinal relief of Mom's mobility issues. He was very good and very thorough...but he told us he couldn't address her mobility as ling as she was in so much severe pain. (She has had x-rays, an MRI and a cat-scan, and all they could come up with is arthritis & spinal stenosis...for which she was getting pain management shots, which helped somewhat) The neurologist sent us to an orthopedic specialist, who examined her with great care and ordered a bone scan to detect a (suspected) sacral fracture. He contacted her primary care physician and recommended hospitalization for the bone scan. From there, she was sent directly to a rehab center...where the hope is that with physical therapy, she will be able to stand up and walk again. Tonight is her second night there.
I have been with Mom a lot during this process. My sister and I got into several heated discussions, and quite frankly, I lost control. I am so angry that my sister's denial has (probably) contributed to my mother's decline and suffering. I am angry at myself for not having the courage of my convictions and forcing the issue somehow before now. I realize that these feelings are not productive. But they are feelings, I have them, and have to deal with them.
I think the situation is out of "our" control, at this point. And maybe that is good. I have been told by a nurse at the rehab that mother CANNOT go "home", unless she moves is with my sister or myself and has 24-hour care. The place she is at is not a long-term nursing home. I suppose it is possible that Mom can improve enough that she would be a candidate for an assisted living place...but I really don't know if that is going to happen. A lot depends on how good the rehab facility is and how my mother's mental condition holds up. Fortunately, I have been visiting several nursing homes all this time, trying to find a "good" place...so, hopefully, we won't be "caught with our pants down", should the time come for Mom to move somewhere.
Mom is definitely NOT happy where she is. She is often confused and sad. The first night she spent there, she cried and screamed all night (after my sister and I left)...so they moved her to a private room because she was disturbing her roommate. Tonight, she is complaining that she is all alone in a big room. The only thing that gives me comfort is that I know there are people there to watch out for her...and she was just as unhappy sitting in her chair at home. At least where she is, she is getting physical and/or occupational therapy twice a day.
My sister called me at work today, screaming at me that Mom was confused, unable to work the television remote, was crying and was even "drooling". My sister told me that she wants mother OUT of there NOW...and that if she "doesn't get my mother back", she will NEVER forgive me. She told me that "Mom was FINE" at home. I know it's not logical, but she made me feel very guilty. I was working, but she told me I needed to get over there...NOW.
I feel very lost. At this point, I don't really know if Mom CAN get better. I don't know if she's up to it. But I also know that she was going to wind up dying alone and afraid, in that stupid recliner that she was living in. I just have to remind myself that the DOCTORS made this call. And I just need to be with Mom as much as I can be, so try to alleviate her fear and encourage her as much as possible.
My sister and I will probably never have a relationship again. She hates me for "pushing the issue", and wanting Mom to not live at home alone anymore. What she really hates me for, I believe, is forcing her to face a reality that she didn't want to face. I will forever be the "bad guy". Even though all I want is for Mom to be safe and have the best quality of life that she can.
I guess, for now, I should start focusing on a long- term facility that specializes in memory care (thanks for that advice, Susan). My sister (when she will speak "rationally" about the subject) INSISTS on a place that is close to her house.. So she can easily stop in "3 times a day". I think that would be great...but I believe it is more important to find the best place possible for mother's needs, as close to my sister as possible. I will drive how ever long I need to to see Mom...since I will only be able to visit 2 or 3 times a week, at most.
This is all just so awful. At a time when a family should be able to lean on one another, we are at war. I said some hateful things to my sister...and, honestly, I meant everything I said. She has allowed her own feelings to get in the way of what is truly best for our mother. And I tolerated it...just to keep peace. I wonder, if I had been stronger, would Mom be better off right now? But then again...I doubt that I would have been able to "make" Mom do anything, without my sister on my side. But now, I will never know.
I've never asked anyone to pray for me before. But now I'd like to ask any of you reading this who do pray, to pray for me (that I receive the right guidance) and pray for my Mom (that she makes progress and is not afraid) and pray for my sister (that she can break through her denial, with grace).
Thanks for being there.
First of all this is one of thee hardest situations you will encounter.Keep God at the fore front he is with you. I am a R.N. who spent 8 yrs at a Psychiatric Hospital working 18 months on the Geri-PPsyche Unit. This gave me a great deal of insight to my mom's condition with Severe Demetia. My husband and myself moved in to assist with care of mom . And in the beginning I was told by siblings they would help, and stay a weekend a month to give us a break. Three months into this arrangement my husband was burnt with 3rd degree burns over 45% of his body. He was not hospitalized and I had to do dressing changeable that took 3 hours a day. And I still had to cook, clean, help mom, laundry, grocery shop and now all yard work on 2 acres. My siblings never believed my mom was having auditory & visual hallucinations. She was paranoid, manipulative, masking, and most.of in denial. So she would tell 2 of siblings it was me making this up. She was non-compliant or not tell truth of situations. I want you to know this, 2 weeks after we moved in, my mom had a stroke at 1230 am. If we had not been there she would have died. It is imperative she is monitored for safety precautions. It is for her well being, she is depending on you to make sure she is cared for. And your sister, well for us our family is split and it probably will never be healed. My husband nearly died February of this year due to the stress of us not having ANYTIME away. 18 months, no break. I almost had a nervous breakdown, I had to make decision..we had to go. And gave responsibilty to my sister. And sue had sitters come in, help with alot of needs around house. And after 3 months, SHE IS OVER WHELMED . AND SHE LIVES IN ANOTHER STATE. It is denial your sister is in. Place your mom in facility that cam meet her needs. You cannot take care of her 24-7. Trust me, I am on medication, my husband is seriously ill, prognosis poor. And his 44 y/o. Since I stepped back to allow someone else to assume care, I have been attacked, scrutinized, sent thate mail , ect. Because I have interupted their life, our well being had no signifiicance or importance. I will put you in my prayers. Don't make our mistake, be objective to what will be the best for your mom. Her safty and care is at the top of the list.
First of all this is one of thee hardest situations you will encounter.Keep God at the fore front he is with you. I am a R.N. who spent 8 yrs at a Psychiatric Hospital working 18 months on the Geri-PPsyche Unit. This gave me a great deal of insight to my mom's condition with Severe Demetia. My husband and myself moved in to assist with care of mom . And in the beginning I was told by siblings they would help, and stay a weekend a month to give us a break. Three months into this arrangement my husband was burnt with 3rd degree burns over 45% of his body. He was not hospitalized and I had to do dressing changeable that took 3 hours a day. And I still had to cook, clean, help mom, laundry, grocery shop and now all yard work on 2 acres. My siblings never believed my mom was having auditory & visual hallucinations. She was paranoid, manipulative, masking, and most.of in denial. So she would tell 2 of siblings it was me making this up. She was non-compliant or not tell truth of situations. I want you to know this, 2 weeks after we moved in, my mom had a stroke at 1230 am. If we had not been there she would have died. It is imperative she is monitored for safety precautions. It is for her well being, she is depending on you to make sure she is cared for. And your sister, well for us our family is split and it probably will never be healed. My husband nearly died February of this year due to the stress of us not having ANYTIME away. 18 months, no break. I almost had a nervous breakdown, I had to make decision..we had to go. And gave responsibilty to my sister. And sue had sitters come in, help with alot of needs around house. And after 3 months, SHE IS OVER WHELMED . AND SHE LIVES IN ANOTHER STATE. It is denial your sister is in. Place your mom in facility that cam meet her needs. You cannot take care of her 24-7. Trust me, I am on medication, my husband is seriously ill, prognosis poor. And his 44 y/o. Since I stepped back to allow someone else to assume care, I have been attacked, scrutinized, sent thate mail , ect. Because I have interupted their life, our well being had no signifiicance or importance. I will put you in my prayers. Don't make our mistake, be objective to what will be the best for your mom. Her safty and care is at the top of the list.
Mom went home from rehab today, after about 5 weeks there. She can stand up now with only one person assisting her and can walk better than when she went in rehab (using a walker and with someone by her side). I believe she has made this progress because she has been receiving good care, rest, nutrition and physical therapy. She has also been in a situation where she's been getting a lot of mental stimulation. The doctor said since she had made progress, she could go home...but only with 24 hour care.
I am fearful that my mother will deteriorate quickly, now that she will be back in her home again. My sister says she is moving her family in with Mom. She says she has all kinds of home healthcare people lined up to help...but we are talking about different people, some skilled and some not...each one there for maybe an hour or two at a time, during the weekdays. Nothing like all the help she's been receiving in the rehab center.
I know I have no choice in this matter. Of course my mother wants to be at home...and I want her to be happy. But I also want her to be safe. My sister says she will "put her life on hold" (her words) to take care of Mom. Yet...already she has asked me to set up some kind of schedule to help out, since she has decided that she needs to work on her real estate business. Doesn't sound like "putting her life on hold" lasted very long to me.
I will continue to visit Mom. But I'm having a problem dealing with this. I don't think this is the right thing for Mom.
For the past year I have been spending my weekends off from work at my mother's, to relieve my sister and to visit with Mom. And for most of that time, I've been telling my sister and my mother that Mom needs more care than either of us can give...in order to do more than barely survive. I know it sounds selfish...but I am not willing to give up my life anymore to support a plan of action that I believe is bad for my Mom. I can't go there and pretend that everything is fine. I believe my sister is either in denial or has ulterior motives...and it plays right into Mother's Alzheimer's and her desire to stay in her home.
One hugely positive thing that happened while Mom was in rehab is that she stopped ruminating and obsessing about my father, who passed 20 years ago and was divorced from Mom for 10 years before that. For the past 30 years...literally...my mother has had the same conversation with me about my father EVERY TIME I SAW HER. How she couldn't believe he left her. How her life would be so different if he was still here. Over and over and over. Just before rehab, she was even telling me how if my father were still alive, she wouldn't be in the shape she is in now. But while she was in rehab, that stopped. For 5 whole weeks. It was remarkable. I know that as soon as she is back in that house, surrounded by all her familiar surroundings and memories, it will all start up again.
The only thing I know to do now is to visit Mom when I can and prepare for the day when my sister realizes that caring for Mom while trying to have her own family AND work (regardless of her promise to "put her life on hold") ...is just too much. I will check out how to change Mom's Medicare plan, so that more nursing home options become available to her. And I have chosen a nursing home that has come highly recommended...and fits my sister's criteria of being "right around the corner" from her.
These are the only things I can think of to be prepared. And to try to deal with this.
I will also add that I will not hesitate to call social services, should I ever find Mother alone at home.
My sister puts forth that she is the only one in the family who truly cares for Mom. I believe that her "caring" is clouded by what she wants in life. (She has a plan to sell Mom's house and use the proceeds to put down on a larger home for her family...under the guise of providing Mom with a "better" place for them all to live.) I think my sister wants to improve her living situation, and she will do ANYTHING to make that happen. It just so happens that she can disguise this ambition by saying she is "doing it all for Mom".
I feel it is only a matter of time before Mom will be unable to walk again...or worse. I fear she will be confined to the recliner she lived in before rehab. I am afraid for my mother and am sick about it.
Yet...I am the "uncaring" daughter.
Mom went home from rehab today, after about 5 weeks there. She can stand up now with only one person assisting her and can walk better than when she went in rehab (using a walker and with someone by her side). I believe she has made this progress because she has been receiving good care, rest, nutrition and physical therapy. She has also been in a situation where she's been getting a lot of mental stimulation. The doctor said since she had made progress, she could go home...but only with 24 hour care.
I am fearful that my mother will deteriorate quickly, now that she will be back in her home again. My sister says she is moving her family in with Mom. She says she has all kinds of home healthcare people lined up to help...but we are talking about different people, some skilled and some not...each one there for maybe an hour or two at a time, during the weekdays. Nothing like all the help she's been receiving in the rehab center.
I know I have no choice in this matter. Of course my mother wants to be at home...and I want her to be happy. But I also want her to be safe. My sister says she will "put her life on hold" (her words) to take care of Mom. Yet...already she has asked me to set up some kind of schedule to help out, since she has decided that she needs to work on her real estate business. Doesn't sound like "putting her life on hold" lasted very long to me.
I will continue to visit Mom. But I'm having a problem dealing with this. I don't think this is the right thing for Mom.
For the past year I have been spending my weekends off from work at my mother's, to relieve my sister and to visit with Mom. And for most of that time, I've been telling my sister and my mother that Mom needs more care than either of us can give...in order to do more than barely survive. I know it sounds selfish...but I am not willing to give up my life anymore to support a plan of action that I believe is bad for my Mom. I can't go there and pretend that everything is fine. I believe my sister is either in denial or has ulterior motives...and it plays right into Mother's Alzheimer's and her desire to stay in her home.
One hugely positive thing that happened while Mom was in rehab is that she stopped ruminating and obsessing about my father, who passed 20 years ago and was divorced from Mom for 10 years before that. For the past 30 years...literally...my mother has had the same conversation with me about my father EVERY TIME I SAW HER. How she couldn't believe he left her. How her life would be so different if he was still here. Over and over and over. Just before rehab, she was even telling me how if my father were still alive, she wouldn't be in the shape she is in now. But while she was in rehab, that stopped. For 5 whole weeks. It was remarkable. I know that as soon as she is back in that house, surrounded by all her familiar surroundings and memories, it will all start up again.
The only thing I know to do now is to visit Mom when I can and prepare for the day when my sister realizes that caring for Mom while trying to have her own family AND work (regardless of her promise to "put her life on hold") ...is just too much. I will check out how to change Mom's Medicare plan, so that more nursing home options become available to her. And I have chosen a nursing home that has come highly recommended...and fits my sister's criteria of being "right around the corner" from her.
These are the only things I can think of to be prepared. And to try to deal with this.
I will also add that I will not hesitate to call social services, should I ever find Mother alone at home.
My sister puts forth that she is the only one in the family who truly cares for Mom. I believe that her "caring" is clouded by what she wants in life. (She has a plan to sell Mom's house and use the proceeds to put down on a larger home for her family...under the guise of providing Mom with a "better" place for them all to live.) I think my sister wants to improve her living situation, and she will do ANYTHING to make that happen. It just so happens that she can disguise this ambition by saying she is "doing it all for Mom".
I feel it is only a matter of time before Mom will be unable to walk again...or worse. I fear she will be confined to the recliner she lived in before rehab. I am afraid for my mother and am sick about it.
Yet...I am the "uncaring" daughter.
Does you mom qualify for Medicaid? Every state has their own criteria, but most programs help with in home services. The goal is usually to keep the person in their own home, as long as they are safe. Most states will then help with assisted living and/or nursing home placement. Medicare usually only covers nursing home (not assisted living) for a short period of time and then only when certain criteria is met (i.e. having been in the hospital for 3 nights and needing skilled nursing, PT/OT/ST) and even then only up to 100 days.
Having Medicaid she would also likely have a case worker. This would be someone impartial and can sometimes help intervene when there is family conflict or disagreements. Your sister may be more willing to listen to someone she views as non-threatening and who has experience with long term care.
Is there a Daybreak or adult day care in your area? Most seniors are hesitant at first to go, but once they go they end up really enjoying it. Its great to give the caregiver a break, and its great for the senior to have other people to socialize with and daily activities to keep busy.
As for assisted living, maybe your mom would be willing to give it a try for a week or 5 days or so. Again this giving you and your sister a break, and allowing your mom an opportunity to see that it might not be as bad as she thinks it is.
If you haven't already read the book, I would highly recommend "The 36 Hour Day". This is a great easy to read book about Alzheimer's disease and Dementia.
Does you mom qualify for Medicaid? Every state has their own criteria, but most programs help with in home services. The goal is usually to keep the person in their own home, as long as they are safe. Most states will then help with assisted living and/or nursing home placement. Medicare usually only covers nursing home (not assisted living) for a short period of time and then only when certain criteria is met (i.e. having been in the hospital for 3 nights and needing skilled nursing, PT/OT/ST) and even then only up to 100 days.
Having Medicaid she would also likely have a case worker. This would be someone impartial and can sometimes help intervene when there is family conflict or disagreements. Your sister may be more willing to listen to someone she views as non-threatening and who has experience with long term care.
Is there a Daybreak or adult day care in your area? Most seniors are hesitant at first to go, but once they go they end up really enjoying it. Its great to give the caregiver a break, and its great for the senior to have other people to socialize with and daily activities to keep busy.
As for assisted living, maybe your mom would be willing to give it a try for a week or 5 days or so. Again this giving you and your sister a break, and allowing your mom an opportunity to see that it might not be as bad as she thinks it is.
If you haven't already read the book, I would highly recommend "The 36 Hour Day". This is a great easy to read book about Alzheimer's disease and Dementia.
I can understand your feelings. My Mom is 86 and my life was hell. I being the primary caretaker had all the problems on my shoulders. She did not recognize me half the time, and was hallucinating, etc. I will not go into the whole thing, except to say that she too is remarkably better since we placed her in this wonderful NH 2 months ago. She still wants to come home all of the time, and when I see how good she is doing, I wonder... However, I think that all the pressure is off of her, and the environment is friendly and comfortable which has made her less afraid. You are right in your assessment. My Mom always wanted to stay home, even though she never recognized it anymore. Do what you can to place her in a safe environment and you will have peace of mind. I still feel guilty but know that she is safe. And...I am close by.
I can understand your feelings. My Mom is 86 and my life was hell. I being the primary caretaker had all the problems on my shoulders. She did not recognize me half the time, and was hallucinating, etc. I will not go into the whole thing, except to say that she too is remarkably better since we placed her in this wonderful NH 2 months ago. She still wants to come home all of the time, and when I see how good she is doing, I wonder... However, I think that all the pressure is off of her, and the environment is friendly and comfortable which has made her less afraid. You are right in your assessment. My Mom always wanted to stay home, even though she never recognized it anymore. Do what you can to place her in a safe environment and you will have peace of mind. I still feel guilty but know that she is safe. And...I am close by.
I work in an assisted living community and have seen first-hand the strain that is caused when family members have different opinions about what is best for their parent(s). I can also say that is rare to meet a resident who wouldn't prefer to live at home over a community environment. While I commend your sister for wanting to fulfill Mom's wishes to stay at home, there is a time when every caregiver needs to assess if honoring their wish is doing more harm than good. The main hurdle you will need to jump over is having your sister realize that Mom's current living situation is not providing her with the quality of life she deserves. Perhaps your sister would feel like a failure by "admitting" that she cannot provide what your Mom needs.
One suggestion I have is to go to a caregiver support group WITH your sister. It may help repair your relationship a bit and see the other person's side a little differently. Many senior living communities offer them on-site - so it would show your sister that they are not the scary, institutional operations she may be imagining.
Living in a community, whether it be in a nursing home or assisted living, offers more than just personal assistance with daily physical care. They offer companionship, socialization, engagement, fulfillment, and so much more. That is why your Mom did so well in her Rehab... In addition to the therapy she had the stimulation and engagement she needed so dearly.
We recently welcomed a new resident to our memory care neighborhood whose family was in our database for over two years. Every time I called to check in the son would say something along the lines of, "We're coming to your community when we need to, but Mom is fine helping Dad on her own right now." When the time finally came for him to move in, he had declined so much that it wasn't long before he needed a nursing home environment. I always think about what things would have been like if they made the move two years ago...
I work in an assisted living community and have seen first-hand the strain that is caused when family members have different opinions about what is best for their parent(s). I can also say that is rare to meet a resident who wouldn't prefer to live at home over a community environment. While I commend your sister for wanting to fulfill Mom's wishes to stay at home, there is a time when every caregiver needs to assess if honoring their wish is doing more harm than good. The main hurdle you will need to jump over is having your sister realize that Mom's current living situation is not providing her with the quality of life she deserves. Perhaps your sister would feel like a failure by "admitting" that she cannot provide what your Mom needs.
One suggestion I have is to go to a caregiver support group WITH your sister. It may help repair your relationship a bit and see the other person's side a little differently. Many senior living communities offer them on-site - so it would show your sister that they are not the scary, institutional operations she may be imagining.
Living in a community, whether it be in a nursing home or assisted living, offers more than just personal assistance with daily physical care. They offer companionship, socialization, engagement, fulfillment, and so much more. That is why your Mom did so well in her Rehab... In addition to the therapy she had the stimulation and engagement she needed so dearly.
We recently welcomed a new resident to our memory care neighborhood whose family was in our database for over two years. Every time I called to check in the son would say something along the lines of, "We're coming to your community when we need to, but Mom is fine helping Dad on her own right now." When the time finally came for him to move in, he had declined so much that it wasn't long before he needed a nursing home environment. I always think about what things would have been like if they made the move two years ago...
You are very caring and your concerns are completely legitimate. My mother was diagnosed with dementia 10 years ago and we opted to move her into a CCRC where she had her own apt. but had nursing care as needed. She is now 89 and living in a skilled facility where she is doing very well.(she had too many medical issues to continue living independently...even with two 4 hour shifts of caregivers every day!) Your sister has control issues and sounds like she also has ulterior motives of her own like selling your mother's house so she can build a bigger one for her family? I was surprised that the rehab let your mother go home..she sounds too frail. also, be aware the UTI's often create more mental confusion---my mom has had many and her increased confusion is always very evident to me! I wish you luck with your sister and suggest you have a conference with your mother's primary doctor.
You are very caring and your concerns are completely legitimate. My mother was diagnosed with dementia 10 years ago and we opted to move her into a CCRC where she had her own apt. but had nursing care as needed. She is now 89 and living in a skilled facility where she is doing very well.(she had too many medical issues to continue living independently...even with two 4 hour shifts of caregivers every day!) Your sister has control issues and sounds like she also has ulterior motives of her own like selling your mother's house so she can build a bigger one for her family? I was surprised that the rehab let your mother go home..she sounds too frail. also, be aware the UTI's often create more mental confusion---my mom has had many and her increased confusion is always very evident to me! I wish you luck with your sister and suggest you have a conference with your mother's primary doctor.
My sister got rid of my mother's primary care physician. She told him Mom wouldn't be coming to him anymore. She put Mom under the care of the doctor who is over the Hospice service in their area. This doctor has never laid eyes on Mom. The previous PCP agreed with me and the rest of our family about Mom's needs. That's why my sister ditched him. I called his office and was told what my sister did...and that they have "purged" all my mother's records. Obviously, that doctor (who had been quite kind and caring, every time he spoke with me) doesn't want to be involved with my sister's circus anymore. I don't blame him.
My sister got rid of my mother's primary care physician. She told him Mom wouldn't be coming to him anymore. She put Mom under the care of the doctor who is over the Hospice service in their area. This doctor has never laid eyes on Mom. The previous PCP agreed with me and the rest of our family about Mom's needs. That's why my sister ditched him. I called his office and was told what my sister did...and that they have "purged" all my mother's records. Obviously, that doctor (who had been quite kind and caring, every time he spoke with me) doesn't want to be involved with my sister's circus anymore. I don't blame him.