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This sounds as though you have family members who you think should be involved, and they are no where to be seen. Or if the doctor should take control and tell you what to do. Many people find that siblings can see what’s coming, and run away. And it really isn’t the doctor’s responsibility. You may indeed be in this on your own, as you live with her.
Have a good scan through the Care Topics button at the top RHS of the screen. Click on any letter of the alphabet (eg M for Medicaid or P for Power of Attorney) and read about all the things that you don’t know about. When you have ‘educated’ yourself, please come back to ask us for any more information that you can’t find, or that is special for your own circumstances. Or even just for more information about Why Me? Best wishes, Margaret
I'm single, no kids, predeceased by my brother and my sister not the kind of person to step up. Many times I have longed for someone, anyone, who I could lean on for support: a cheerleader, a sounding board for my ideas, a helping hand to bring them to fruition. But we only need to read on the forum to see the flip side, the people in a poster's life who have actively become a stumbling block to change and progress. The grass is always greener - we just have to deal with the hand we are dealt.
You're right about that one, my friend. We often just have to deal with the hand we're dealt. This being said, no one has to sacrifice their entire life to caregiving. Nor should they. No one should be judged for refusing to take it on either. So many of us here just had the caregiver role thrown in our laps and it wasn't our choice to take it on. One lesson so many family caregivers never learn is knowing when to quit. A caregiver should be able to quit whenever they believe it's time to without guilt, societal chastisement, and certainly without family judgment and shaming.
I'll be blunt here: it falls on you because you are doing all the care duties. Without your assistance, your mother would have no option but to move to AL, so the decision entirely rests with you given that mother has no intention of moving under the present arrangement. You have been the carer for some time - have you discussed/considered in earlier times the 'cut-off' points for when she would be moved? Mobility (or lack of it) is on my list as "unmanageable", as is bowel incontinence, and recognition - these are my limits, sadly not up to the devotion of many other posters, but beyond my tolerance and I have these objective triggers to alert me to not coping (since by that stage I may not be thinking too clearly!). You have clearly given much of yourself to care for your mother - it does not have to be at your personal suffering/loss or a 'forever' obligation. Seek affirmation of your intention from family and decide this together to provide some reassurance that you are merely the representative for your mother's future care.
Your response is excellent. I think you're absolutely right about caregivers setting boundaries in advance about what level of care will be unmanageable for them. This way everyone is on the same page. I like this idea so much and I think all people who are considering becoming a family caregiver to an elderly person, should most certainly give consideration to what you have done.
Whathappened, reading your profile, it sounds as though you want someone else to tell mom she is moving to AL.
Do you have POA?
Have you picked out a facility?
Don't try to convince or reason with mom. She has dementia.
Don't try to reason with family. They don't get it.
Set a date, get mom evaluated by your chosen facility. Tell mom you need a break and that she will be well tsken care of in this new "senior apartment".
Who else would be/could be involved in the decision? Is there other family? Are you doing the caregiving. If you are the only family, the only caregiver, sadly the decision falls on your shoulders. It is a decision for YOUR life as well as for hers. You certainly should feel free to discuss with her doctor so you have some support and opinion. I wish you luck.
Have you had a needs assessment done? This is the 1st step to ensure that she is being placed in a facility that can meet her care needs.
Your moms needs have decided that she now needs a village. Please do not feel guilty that you are not a village.
You will be able to be her daughter again and that is the role that you were born to. You will advocate for her, you will provide enrichment and you will be able to provide a loving, happy smile to her. These are invaluable for her and she will benefit from getting them from you.
It is okay that she is being placed where she can receive the level of care that she now needs. It is okay!
You don't really have to tell her anything, take her for lunch at the facility, enlist some friends and family to move her stuff in and after lunch take her to her room. We tend to project our fears and stress on our loved ones and one thing that I have seen with my loved ones suffering from this damnable disease, they read your emotions and respond similarly. So, be as upbeat and nonchalant about this and when you leave, that's when you can bawl your eyes out. For her, only smiles and wellbeing. The staff will help you get her situated. Of course this will be hard, all big changes in life are.
You have given her the gift of your care, now it is time to take care of you. You wouldn't be any use to her if you became a statistic.
May The Lord give you strength, peace and wisdom for this new season in your and your mom's lives.
Edit: I just want to clarify, moms needs and level of care required are the decision makers in this situation. You have no choice, her needs require greater care than you can provide. The disease has made the decision.
Guilt cannot be allowed to interfere with doing what is best for your mother. What will end up happening is that it will overrule your better judgment and you won't make the best decisions for her. I know it's hard to not let guilt play into a situation, but we have to try very hard to keep it at bay when the decision to place a loved one in facility care has to be made. You are one person. Not a team of caregivers. Your mom's care needs have become more demanding and you can't do it all on your own anymore. Forget about family helping out with the decisions. More often than not all the caregiving and decisions concerning it will fall to one person. What's best for your mom is AL. It might be hard at first for both of you when she's acclimating to new surroundings. It's what's best for her and you just have to do it.
If I listened to what my mother wanted to do, she'd be 'living in her own home' at over 94 years old with advanced dementia, in a wheelchair and incontinent, with afib, CHF and GERD to where she's either constipated, has diarrhea all the time, is vomiting or requiring meds for all the nausea. And that's just the tip of the iceberg. She's fallen 73x, 33 of those times while in Memory Care the past 23 months. So, she has very poor decision making skills and very poor judgement skills, to put it mildly. As her POA, I make decisions FOR her in an effort to keep her safe and as much out of harm's way as humanly possible. That means she doesn't get to live in 'her own home' or with me, because I can't handle all of her issues, nor can I pick her 200lbs of dead weight off of the floor every time she falls, so she lives in Memory Care till her $$ runs out, then it's off to Skilled Nursing with Medicaid.
We don't always get what we want in life, but with any luck at all, we often get what we need.
As an only child, I'm it. I get to make ALL the decisions ALL the time, and it's no fun at all. I also get to take all the brunt of her anger and frustration, all the blame for everything including all of her misery and complaining. It is what it is. I don't desire things to be this way either, but I won the booby prize in this life, I guess.
Make the right decision for your mother's safety and for your sanity. Don't look back and just expect her wrath, if she's the kind of woman my mother is. At least she'll be safe in AL and you'll get to move on with your own life, to some degree, while managing her life from your desktop and putting out the fires that crop up in managed care. And all the rest of the commitments you'll have which are plenty, believe me. Getting her into AL doesn't mean you won't have work to do still. It's just not hands-on care you'll be doing anymore.
My friend's FIL similar. Still deemed competent so has decided to discharge from actuate rehab to his home this week - rather than respite or SNH as Dr advised.
Is currently wheelchair user with # pelvis, # femur, multi other issues + umpteen falls history.
Is there care at home? Nope. Elderly wife in hospital too. Does he expect family to just make everything magically ok? Yep.
I'm sure his family WOULD like him to see reason... But they know this is out of their control. They will use their OWN reason to let the real world in. Let the world provide his options.
As you have done Lea with such skill & sence.
I tell my own kids now - just arrange what's necessary for me in the future (if I lose all reason). Do not sacrifice your life.
Imho, this was me - after living out of state with my late mother for an extended period, my brother told me that I must pack up my mother's items for her to move to an AL. I was "running on fumes," exhausted. I was lucky to even locate her things to pack, let alone a box to put them in.
Did she appoint anyone to be POA or to make decisions for her? Or did it just "fall into your lap" (cuz you were not fast enough to stand up and leave the room😉) What you need to do is make a stand and tell family that you are going to place mom in Memory Care. (not AL) She will be cared for by staff 24/7. She will be safer in a facility that has been built for the needs of people with dementia. IF there are family members that do not agree with your decision the fastest way to get them to change their mind is hand them a packed suitcase with moms stuff in it. A list of ALL the things you do EVERY day, along with a time schedule. Help mom stand up and say...Mom, you are going to stay with "Sue and Bill" for a while. Then walk away. I will bet that anyone that is handed that suitcase will back down. Do not let anyone "guilt" (I hate that word!) you by saying mom should stay at home or family should care for her if they are not willing to take their share of the caregiving.
Have other siblings already said they don't want any part of it? Or, are you waiting to see who will step up to help out?
Call a family meeting "Plan for Mom" and see who shows up or flat out says they don't want any part of it. Those who show up make the plan. You may find yourself flying solo, not much to do about it except create a plan that works out best for both of you.
If you're talking AL, it sounds like there is enough money to handle that expense. If mom wanting to stay home, and of sound mind, then use the money to hire people to come to the house. Use all that is needed for her care and to ease the burden on you. -Be prepared for all those who didn't want to help with a plan to step in when they see you spending the money. Step in, meaning - have comments. They still won't step in to help. They will just have lots of ideas on how to save the money mom is spending. Unless they offer specific committed schedule to come and take care of mom to save money - keep spending.
You are the one best suited to help make this decision since you see her behavior every day. Others who can help you with this task:
1 - Lawyer - make sure you have mom's will and powers of attorney (medical and financial) drawn up.
2 - Her doctor - evaluate her for mental competency. He/She may make referrals to a neurologist (to evaluate and treat dementia) and/or a geriatric psychiatrist (to evaluate and treat mental health issues).
3 - Mom's banker - have all her bills paid automatically every month. Also get electronic banking initiated to make handling her finances easier.
4 - Talk to administrative personnel from several AL/MC centers. Ask for their list of services and the costs. Ask which ones will help apply for Medicaid if it becomes necessary.
Are you her POA for finances and medical? Is anyone else? If so, it is your decisions that matter. If not, is there someone else?
When the time comes that care is beyond the capability of the person(s) providing the care, then a facility would be the next choice. If there are funds available, hiring in-home help might work for a while, but all too often even this isn't enough. If she can afford to have hired help, start with that while you explore AL options.
As for wanting others to make the decisions with you, who are we talking? Siblings? Lawyers? Doctors? Anyone/Someone else? If you have siblings and they are not committing to this decision, but have no POA, let it go. Clearly they aren't working with you. Someone has to be the decision maker. Lawyers and doctors can make suggestions or pave the way legally, but in the end they are NOT the ones to make the decisions.
If you feel that making the move will end up with her blaming you, that could happen even if someone else made the decision for you and made the actual move happen. That happened to me when we took mom's car - bro did all the talking and took the key. Who got all the blame? Me! I did coordinate with 2 bros regarding the move (tried in-home, nope, she refused), did all the prep work myself, but left the actual move to them. hoping to avoid the blame. Thankfully I never got any - no one did really. She just begged YB to take her back to her condo when he visited. So on some level she knew he brought her there and/or knew better than to ask me.
In the end, it is what is best for your mother AND you. If you cannot continue with the care-giving and can't hire help, then the only viable option left is a facility (well, abandonment IS an option, but NOT a good one!)
As hard as it is, if you are getting no support from others, you will have to make a decision and stick with it.
This is your decision to make, because it directly effects your life. Don’t expect your mom to make decisions that you would like her to make. Her decisions may be the opposite of what you desire in life.
I was a total wreck by the time I found this forum. It truly helped me to see people on this forum who had either been in my shoes and were able to eventually change their circumstances or they had been successful in preventing stressful situations from occurring in the first place. We can learn what to do that will help us and what not to repeat, due to it being the wrong choice.
Don’t beat yourself up about where you are now. What good would that do? Everyone on this planet has made wrong decisions at some point in their lives. Also, don’t expect things to improve overnight. Nothing happens overnight.
Everything starts with just one thought, one step at the time. All of your steps will eventually end up in a positive direction.
So, start thinking seriously about what changes are needed in your life. Then you can make plans to arrange for those changes to occur. Of course, these changes will include your mom. She’s a major roadblock in achieving balance in your life.
Look at the entire picture, your end goal, and figure out the steps that you need to take to get there. If you feel overwhelmed and don’t know where to start, seek the help of a social worker to help you plan. It never hurts to have a neutral, objective viewpoint on the situation.
Sorry to be late to the party here, but life just got in the way. Doesn't it absolutely suck to have to make the decisions for another person's life? I've been doing it for a while now, and believe me, it does not get easier, better, or quicker. It's just one darn thing after another. I am so sorry that you have to do this. There's no advice here, only big hugs and a friendly nod of the head in commiseration.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Who's in your team? Partner? Siblings? Area of Aging? Social Worker? Elder Atty?
Do you have the authority to make the big changes? Who has enduring POA?
Have a good scan through the Care Topics button at the top RHS of the screen. Click on any letter of the alphabet (eg M for Medicaid or P for Power of Attorney) and read about all the things that you don’t know about. When you have ‘educated’ yourself, please come back to ask us for any more information that you can’t find, or that is special for your own circumstances. Or even just for more information about Why Me? Best wishes, Margaret
You're right about that one, my friend.
We often just have to deal with the hand we're dealt.
This being said, no one has to sacrifice their entire life to caregiving. Nor should they.
No one should be judged for refusing to take it on either.
So many of us here just had the caregiver role thrown in our laps and it wasn't our choice to take it on.
One lesson so many family caregivers never learn is knowing when to quit. A caregiver should be able to quit whenever they believe it's time to without guilt, societal chastisement, and certainly without family judgment and shaming.
You have been the carer for some time - have you discussed/considered in earlier times the 'cut-off' points for when she would be moved? Mobility (or lack of it) is on my list as "unmanageable", as is bowel incontinence, and recognition - these are my limits, sadly not up to the devotion of many other posters, but beyond my tolerance and I have these objective triggers to alert me to not coping (since by that stage I may not be thinking too clearly!).
You have clearly given much of yourself to care for your mother - it does not have to be at your personal suffering/loss or a 'forever' obligation. Seek affirmation of your intention from family and decide this together to provide some reassurance that you are merely the representative for your mother's future care.
Your response is excellent. I think you're absolutely right about caregivers setting boundaries in advance about what level of care will be unmanageable for them.
This way everyone is on the same page.
I like this idea so much and I think all people who are considering becoming a family caregiver to an elderly person, should most certainly give consideration to what you have done.
Do you have POA?
Have you picked out a facility?
Don't try to convince or reason with mom. She has dementia.
Don't try to reason with family. They don't get it.
Set a date, get mom evaluated by your chosen facility. Tell mom you need a break and that she will be well tsken care of in this new "senior apartment".
Get your life back on track.
Your moms needs have decided that she now needs a village. Please do not feel guilty that you are not a village.
You will be able to be her daughter again and that is the role that you were born to. You will advocate for her, you will provide enrichment and you will be able to provide a loving, happy smile to her. These are invaluable for her and she will benefit from getting them from you.
It is okay that she is being placed where she can receive the level of care that she now needs. It is okay!
You don't really have to tell her anything, take her for lunch at the facility, enlist some friends and family to move her stuff in and after lunch take her to her room. We tend to project our fears and stress on our loved ones and one thing that I have seen with my loved ones suffering from this damnable disease, they read your emotions and respond similarly. So, be as upbeat and nonchalant about this and when you leave, that's when you can bawl your eyes out. For her, only smiles and wellbeing. The staff will help you get her situated. Of course this will be hard, all big changes in life are.
You have given her the gift of your care, now it is time to take care of you. You wouldn't be any use to her if you became a statistic.
May The Lord give you strength, peace and wisdom for this new season in your and your mom's lives.
Edit: I just want to clarify, moms needs and level of care required are the decision makers in this situation. You have no choice, her needs require greater care than you can provide. The disease has made the decision.
You are one person. Not a team of caregivers. Your mom's care needs have become more demanding and you can't do it all on your own anymore.
Forget about family helping out with the decisions. More often than not all the caregiving and decisions concerning it will fall to one person.
What's best for your mom is AL. It might be hard at first for both of you when she's acclimating to new surroundings. It's what's best for her and you just have to do it.
We don't always get what we want in life, but with any luck at all, we often get what we need.
As an only child, I'm it. I get to make ALL the decisions ALL the time, and it's no fun at all. I also get to take all the brunt of her anger and frustration, all the blame for everything including all of her misery and complaining. It is what it is. I don't desire things to be this way either, but I won the booby prize in this life, I guess.
Make the right decision for your mother's safety and for your sanity. Don't look back and just expect her wrath, if she's the kind of woman my mother is. At least she'll be safe in AL and you'll get to move on with your own life, to some degree, while managing her life from your desktop and putting out the fires that crop up in managed care. And all the rest of the commitments you'll have which are plenty, believe me. Getting her into AL doesn't mean you won't have work to do still. It's just not hands-on care you'll be doing anymore.
Good luck
Such a tale. What a journey but handled so well.
My friend's FIL similar. Still deemed competent so has decided to discharge from actuate rehab to his home this week - rather than respite or SNH as Dr advised.
Is currently wheelchair user with # pelvis, # femur, multi other issues + umpteen falls history.
Is there care at home? Nope. Elderly wife in hospital too. Does he expect family to just make everything magically ok? Yep.
I'm sure his family WOULD like him to see reason... But they know this is out of their control. They will use their OWN reason to let the real world in. Let the world provide his options.
As you have done Lea with such skill & sence.
I tell my own kids now - just arrange what's necessary for me in the future (if I lose all reason). Do not sacrifice your life.
What you need to do is make a stand and tell family that you are going to place mom in Memory Care. (not AL)
She will be cared for by staff 24/7. She will be safer in a facility that has been built for the needs of people with dementia.
IF there are family members that do not agree with your decision the fastest way to get them to change their mind is hand them a packed suitcase with moms stuff in it. A list of ALL the things you do EVERY day, along with a time schedule. Help mom stand up and say...Mom, you are going to stay with "Sue and Bill" for a while. Then walk away. I will bet that anyone that is handed that suitcase will back down.
Do not let anyone "guilt" (I hate that word!) you by saying mom should stay at home or family should care for her if they are not willing to take their share of the caregiving.
Call a family meeting "Plan for Mom" and see who shows up or flat out says they don't want any part of it. Those who show up make the plan. You may find yourself flying solo, not much to do about it except create a plan that works out best for both of you.
If you're talking AL, it sounds like there is enough money to handle that expense. If mom wanting to stay home, and of sound mind, then use the money to hire people to come to the house. Use all that is needed for her care and to ease the burden on you. -Be prepared for all those who didn't want to help with a plan to step in when they see you spending the money. Step in, meaning - have comments. They still won't step in to help. They will just have lots of ideas on how to save the money mom is spending. Unless they offer specific committed schedule to come and take care of mom to save money - keep spending.
1 - Lawyer - make sure you have mom's will and powers of attorney (medical and financial) drawn up.
2 - Her doctor - evaluate her for mental competency. He/She may make referrals to a neurologist (to evaluate and treat dementia) and/or a geriatric psychiatrist (to evaluate and treat mental health issues).
3 - Mom's banker - have all her bills paid automatically every month. Also get electronic banking initiated to make handling her finances easier.
4 - Talk to administrative personnel from several AL/MC centers. Ask for their list of services and the costs. Ask which ones will help apply for Medicaid if it becomes necessary.
When the time comes that care is beyond the capability of the person(s) providing the care, then a facility would be the next choice. If there are funds available, hiring in-home help might work for a while, but all too often even this isn't enough. If she can afford to have hired help, start with that while you explore AL options.
As for wanting others to make the decisions with you, who are we talking? Siblings? Lawyers? Doctors? Anyone/Someone else? If you have siblings and they are not committing to this decision, but have no POA, let it go. Clearly they aren't working with you. Someone has to be the decision maker. Lawyers and doctors can make suggestions or pave the way legally, but in the end they are NOT the ones to make the decisions.
If you feel that making the move will end up with her blaming you, that could happen even if someone else made the decision for you and made the actual move happen. That happened to me when we took mom's car - bro did all the talking and took the key. Who got all the blame? Me! I did coordinate with 2 bros regarding the move (tried in-home, nope, she refused), did all the prep work myself, but left the actual move to them. hoping to avoid the blame. Thankfully I never got any - no one did really. She just begged YB to take her back to her condo when he visited. So on some level she knew he brought her there and/or knew better than to ask me.
In the end, it is what is best for your mother AND you. If you cannot continue with the care-giving and can't hire help, then the only viable option left is a facility (well, abandonment IS an option, but NOT a good one!)
As hard as it is, if you are getting no support from others, you will have to make a decision and stick with it.
I was a total wreck by the time I found this forum. It truly helped me to see people on this forum who had either been in my shoes and were able to eventually change their circumstances or they had been successful in preventing stressful situations from occurring in the first place. We can learn what to do that will help us and what not to repeat, due to it being the wrong choice.
Don’t beat yourself up about where you are now. What good would that do? Everyone on this planet has made wrong decisions at some point in their lives. Also, don’t expect things to improve overnight. Nothing happens overnight.
Everything starts with just one thought, one step at the time. All of your steps will eventually end up in a positive direction.
So, start thinking seriously about what changes are needed in your life. Then you can make plans to arrange for those changes to occur. Of course, these changes will include your mom. She’s a major roadblock in achieving balance in your life.
Look at the entire picture, your end goal, and figure out the steps that you need to take to get there. If you feel overwhelmed and don’t know where to start, seek the help of a social worker to help you plan. It never hurts to have a neutral, objective viewpoint on the situation.
Best wishes to you and your mom.