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My mother’s condition (stroke, right side paralysis, unable to stand, incontinence) is waxing and waning. She became unable to stand last December and her caregiver expressed inability to continue caring for her due to her condition worsening. I came and have been staying with her since January and have decided she should move in with me and my husband. She does not want to move. People (caregiver, family) think they can handle my mom now that I have decided to move her in. My issue is, if she stays and they continue to struggle (because that is how they are, my family is addicted to suffering), what happens in 6 months when she declines further? I took medical leave from work to deal with this but I still have a life I need to get back to. Do I let them deal with this on their own or continue with the plan of moving her in with me? I do not appreciate the back and forth with these people because it adds too much confusion. When someone says “I can’t do this anymore” or “I can’t do…” I take that very seriously and act on it. I don’t know if because of the fact that I am physically here and handling everything, they seem to have gotten a second wind. Any advice is appreciated.

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Mom needs to be in a facility, not in anybody's home.
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How much do you love your mother? It doesn’t sound like you are close with your sibs. Just know that it is a Very hard job. It is normal for them to complain because all caregivers need to vent. Rather than uprooting your mom and possibly making your sibs angry, give them encouragement and acknowledge what they are doing!
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My first question is, "Who has your Mom's Healthcare power of attorney? Only one person should be making healthcare decisions on behalf of your mom. If she can't, then her healthcare power of attorney should. If nobody, the first thing you need to do is convince her to have it done so that you or whoever has the legal power can make decisions on her behalf when she is unable to. If you explain that you are not legally permitted to help her unless you have a healthcare, she will probably go along with it.

Secondly, do you live in a state with "Filial Responsibility Laws? Based on your description, your Mom needs 24/7 care for her safety. If your state has Filial Responsibility laws, you and all of your siblings are financially responsible for her care expenses as well as insurinbg her safety. If your siblings were aware of that, they might be less inclined to give advice from the peanut gallery. Likewise, if your mother believes in order to stay in her home, she must have around the clock paid caregivers, i'm betting she woulld be happy to move in with you.
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Jen, to me this reads as you arrived & saw struggle. You decided to act & take the lead. Decided to take Mom home with you.

The other family members however, (whoever they are) + caregjver (?) were not content to follow this new plan.

Your situation is now a stalemate. Not permitted to lead. Not happy/able to live in & follow their lead.

Only option left seems to be to step back out.

Leave your phone number for if they wish to call a family meeting & work together to find a longer term sustainable plan.

Coz that's the aim - a good plan for Mom, right? That should stay the focus - the care plan (not family clashes).

Sometimes it takes a step down in health for the caregivers to accept the plan has to change. Sometimes the health crises happens to the caregiver, not the care recipient. If you can, stay open to working with them then.

In the meantime, I'd kindly suggest having a really good chat with yourself. Ask yourself why you want to take Mom home.
Why you?
Why your home?
How would you do it differently to what is being done now?
Who would be in your care team?
What happens after care needs blow out past a home setting?

Finally, is your plan a solid practical care plan? Or heart-felt gut reaction?
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My sister and i have taken on that responsibility of caring for my 97 yr old mother in my mother’s home. Sister lives out of state but we change off every 2 months. Its been about 7 yrs or so. My Dad had provided the necessary income for her financially, we have a healthcare worker come in M-F from 9-2pm. Sister and i are both retired. We have had issues but they are manageable. I had animals so i returned home daily (15 min away) to care for them. Not good quality of life for them. Sister lives in Kauai w/ husband. She comes up for medical needs often. It can work if you have family involved too. Social life is practically non-existent. But her granddaughters are very close to her and visit 1-2 times a week. And of course we get invited to family events. They help w her wheelchair and walker and sometimes her great-grandchildren will come and pick her up. This is a cultural thing for my family. We take care of our kupuna. I would feel horrible to see her in a facility. Things will change as time goes on. And we may need to make a new plan. All is not lost. Some can rise to the occasion and make it work. Wish us luck!
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It sounds to me like you have no idea what you are getting yourself into by moving mom in to your home! It is not a wise idea!

You say you have a life to get back to. And the people who have been taking care of mom say they can't do it any more.

If you have loads of patience, and can put your life on hold for an undetermined period of years, and you truly desire to learn to become a full time caregiver, changing diapers, bathing, dressing your mother, making her food, possibly feeding it to her, and getting her out of bed as needed, so you can spend time with your mother because you love her so much, it would be a labor of love, then, by all means, consider moving her in to your home.
Because that is what it will become. Consider carefully before you act.
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SouthieBella has described it accurately. I am the only surviving child (62 yrs old) and was trained from childhood to do what Mom wants in any and everything. It just about killed me. It took my own daughter to convince me that I was ruining my health for a person who wouldn't be bothered if I died before her. If you want to be the next living sacrifice, have at it.
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Don’t move your mom in with you. Move her to a facility. She will be safer and cared for and if you can find a place convenient to you and the family, everyone can visit as often as they’d like.

Dont let the family bully you or guilt you. You said yourself you still have a life to get back to. Get back to your life before it’s too late. If others in the family feel like they could do a better job, let them, and don’t look back.

Of course your mom doesn’t want to move. It will be brutal at first wherever you move her. Therefore move her to a facility where you at least have a chance at getting back to your life and she has a chance of decent care.

Good luck and keep us posted.
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As long as you are there dealing with all of it, they won't do anything. You have solved their problem. Do what you need to do, without asking/consulting them...whether putting your Mom in care or taking her home. Just be aware that being at your home is easier for you, but it still is not easy. Hope that you have powers of attorney for health and finance!
Good luck. Remember to take care of yourself, too.
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Act according to what the situation is now. If other family members are not helping you now, don't expect help in the future. Talk with your spouse about this decision and how your lives will change. Talk about how together you will help your mom. Also talk about how you will manage health issues of your own or the need for time off for vacation.
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Jen418: Do not move her in with you. Ergo, your "family is addicted to suffering."
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Place your mother in an AL facility instead of your home. Her needs are beyond your level of care. Our other readers have offered good advice. Get your life back and just be her daughter/son instead of a caregiver.
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Read Southiebella answer. I'm in exactly the same situation right now, and it is causing a riff with my husband and is extremely taxing on my health.
I have been doing it for 2 1/2 years now. I am currently looking to place him for at least this upcoming spring and summer to try and get our life back and get a break.
Will evaluate after summer.
My health has really taken a toll.
Best to place your Mother in the beginning a good Board and care home for her situation and her condition would be better. I've gone to 6 of them recently and out of the 6 I would have placed him in three of them.
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What happens when she continues to decline? It will all be your burden, 24/7. Please, reconsider moving her into your home.
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Do not join the “ addicted to suffering “ club. And certainly do not bring this situation to live with you at your home . You will not have your life back if you move Mom in with you .

This second wind will die down , they will scatter and you will be left with all of it to handle .

There needs to be a realistic discussion about the care that family can and can not do and the funds ( mother’s money ) available for paid caregivers or placement . If your mother owns a home it can be sold to pay for a facility . A few months before her funds run out apply for Medicaid .
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Coming in with a viewpoint of someone who is doing this at home.

In November, 2017 I brought my mother to live with me after it became very clear that she was no longer able to live on her own safely. (My reasons are for another conversation.). I am doing this 100% solo (my only sibling is dead) and My mother will be 97 years old next month.

We are now on our 7th year of this and there are a few things that I've learned.

It's my opinion that if you move your mother into your home, you will ultimately be taking on 95% of the daily care duties and 100% of the night duties. Can you navigate work while sleep deprived?

You mention that you have a life you need to get back to......I had one also...
Be prepared that it will be a huge struggle to keep that life over time. At first, I was able to maintain my life as long as my mother's health was fairly stable. But nothing stays the same, and as her care needs increased, my life decreased. Now I still have only a fraction of my own life.

Expect that to happen.

Sitters - other caregivers, etc.....
I've had a variety of care ladies coming in to stay with my mother so I can get out. Two of them have been with me since 2020 and others have come and gone and had to be replaced. (I hire privately and have not used an agency.) The sitters are about 50-60% reliable overall. Either they are taking a trip, or they or someone in their house is sick (I never allow anyone in my home who has been sick within the last 7 days), or they have an appointment for something or other and can't come.
So, be ready to have to change or cancel your own plans at a moment's notice.

Example: It took me from September to December - making and then having to cancel and reschedule appointments - to have my annual exam and Pap smear. Very frustrating, but a reality.

Need sleep?
I have not slept through the night but a handful of times in the past 4+ years. If I have to get up once a night with my mother, that's a good night. I have had many, many nights that she kept me up half the night and at my age (64) that is destructive emotionally, mentally and physically. My mother can wake up even after having 2 doses of Ativan. There is no sure remedy that I have ever experienced that can guarantee sleep.

Do you like to travel? Go out in the evenings? Garden?
Since my mother came to live with me, I have only spent two nights out of town and that was to see my son graduate from college in 2018. Just getting a sitter to stay with her so I could go to one dinner party was hugely stressful and not worth the aggravation. Then minute I walked in the door, she started calling me after having left the sitter alone the entire time I was gone. Very frustrating.

While I type this, I'm sitting in the house with her, because of course she can't be left alone. It do this day in and day out.

Suffice it to say that eventually someone will have to perform all of her "activities of daily living" for her, all the way down to brushing her teeth and clipping her fingernails and everything else you can think of.

As the years wear on, your family and caregivers may just drift away, because, well, you're there, and "things come up" etc. etc. I would prepare for that as well.

Nothing wrong with bringing your mother to your house to live, but I would recommend that you count the cost. No one told me that.

Your home is no longer your private sanctuary. It's where you work - after you work if you're able to hold down a job - and not where you relax.

You will have the new vocation of running a care home for one. I wish you all the best on your decision - just make sure that you can do it alone if your other caregivers and family don't stick it out.

Make sure that you are in peak health, emotionally, physically, psychologically and spiritually and that your marriage is healthy....because doing this will threaten to crush you in every way.

I wish you the best.
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Southernwaver Feb 17, 2024
It’s hard to watch someone on the front end of this when we know the struggle. I’m sure it sounds rude and unhelpful sometimes, but it’s like watching someone about to fall off a cliff.
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First, and foremost, you all need to sit down and have the “brutal” discussion of what is best. Everyone has something they can add to the loving care of a loved one.
If there is one portion of the family that is able to handle the 24/7 care for your Mom, that is great. However, you all love her so include the rest. Perhaps a rotation (if local) to give you a break or needed supplies/shopping/appointments. Maybe a day of pampering your Mom. You have to become creative for sure.
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Nothing in life is ever easy it’s about sacrifice and going the extra mile. Think about how God would see it and when it’s ur turn. It’s about challenges love and helping your parents. It’s never going to be easy. If your husband and children help sometimes and mom has income that can help with add’l caregiver to assist. With God all things are possible.
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Southernwaver Feb 17, 2024
When it’s “my turn” I’m going to Switzerland and ending it. I will never put my family through what I went through
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Like they say to get things done right u have to do it yourself. Those ppl gave up they will continue to give up and watch her suffer. It’s ur mom I say take her it’s best even if she doesn’t want to but it’s best. U can do better God will Bless u. Just hire someone to come in and help u. It’s about Love, organizing getting assistance and making time for u and ur family. May God Bless u and ur family.
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MargaretMcKen Feb 17, 2024
Candy apple, your profile gives absolutely no indication of you, your age or life experience, or your caregiving track record. “Candy apple” is not what is usually given to carers, whether by God or anyone else. Too much candy is not good for the brain, or any other part of the body.
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So, mom moves in with you and what happens to her house?? There's still a lot of responsibility to take care of. Electricity/water/ homeowners insurance and property maintenance. I remember chasing after the mail on a weekly basis!!!
Very tiring. It took some time to get it cleaned out and sold so she had money for her AL. Then a few months later she went to memory care and they let her keep her cat,Thank God! She became bedridden and then I chased the food/water and litter box every other day! Luckily I got mom into a place about a mile away. It's always something!!! I'm with everyone else here, you might think you can do it but it's going to get more stressful after time. My brother accused me of being mean to my mother but it wasn't like that, it's called burn out.(Armchair dictator, where was he? Couldn't even fill her pill dispenser!!) You can only do so much and then the irritation sets in. It creeps up on you and you end up being the caregiver and you lose your status of being a loving daughter. The family assumes you got it and she's all yours! They get to come and go and get all her love, how nice for them. You become the bad person and you aren't.
However good your intention is, you've got to come up with another plan.
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strugglinson Feb 17, 2024
This is a good point too. I'm in this middle zone territory too.
Moved my dad into an AL near me, which is good in many respects for me being able to visit, sometimes on short notice
But for various reasons, psychologically we are not ready to sell his house yet. Its an hour drive away. So I am going over every week or two to check on it, etc etc. I forwarded mail to me, but some is not forwardable so I have to still deal with that. Maintain the lawn etc, . And worry about it getting broken in to, squatters etc..... It is an added time factor and worry factor....
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I don’t think you’ll find more than a single hand full of examples where people in this forum are glad they took their parent in. You have a life you want to get back to … but if you move her in, you will not be going back to it. You’ll become the 24/7 at home caretaker unless you’re planning that your husband also do some of the hands on care. (And why do that to him?). I wouldn’t do it. There’s no upside for you or her.
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When I see what’s ahead for some of us, paralysis, unable to stand, incontinence, forever utis and what the family has to go through, I think some European countries have the right idea. To be able to decide when to end it is a comforting thought.
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KNance72 Feb 17, 2024
I do too .
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I understand your situation exactly because I am a retired emergency department Registered Nurse with 40+ years of experience. My sister has a business degree and I had been managing my parents's health and financial situation for years before she moved into town. After my sister moved into town to be closer to our parents things became difficult. My father passed away and soon after we met with an attorney to finalize probate...I was the personal representative of the estate plus the POA. Suddenly my sister made a point of stating that because she had a business degree she was more "qualified" to manage Mom's finances even though I had been managing everything before she moved into town. My mother was starting to also have health issues that were becoming labor intensive. My mother lived alone at this time with both of us helping with the groceries, bills, etc... We finally came to an agreement that my sister would be Health Care POA and I remained Durable POA. I should have never agreed to this but to keep the peace I did. My sister now and then brings up the issue that I should turn all the financial decisions to her....I refuse. Health care for my mother now has become labor intensive and she can no longer remain at home. Because of my experience in the emergency department I have been able to deal with the siutation better than most but my sister has been a challenge. My mother currently resides in a Long Term Care facility/Nursing Home. I thank God that my father put funds away so my mother could be taken care. These funds are the ones that I am managing which my sister wants to control. Dealing with family members is labor intensive and will cause disruption within the family. It has in mine...

In your situation I would advise not to move your family member into your home for you to care for. This type of situation is riddled with caos and work that you most likely are not prepared for. It is best to hire in house caregivers from a licensed agency which can be provided via your nearest hospital social worker...they will provide you with a list of agencies in your area- or private pay care at an Assisted Living Facility or Long Term Care Facility. If funds are not available then you need to look at Medicaid in your state and their rules and regulations. With Medicaid you have to exhaust your family member's assets before he or she is accepted and then you will need to turn over their social security checks to them for management of funds. There are family members who refuse to do this and expect the government to feed them and provide them a place to sleep for free. That is not how things work. The bottom line is when the money runs out Federal Assistance is the next step and they then will make decisions about your health care. That is just the way things are.

I was the only one qualified to take care of my mother at home but this would have been impossible because she required 24 hour care. My sister suggested that my mom stay with her for a few weeks and then that I would take her for a few weeks. Absolutely not...my husband is disabled....impossible because I saw the writing on the wall....I would have ended up with the majority of the work. I saw this many times with family members in the emergency department. They even ended up with shouting matches in the ER about who was going to do what...with Hospital Security being brought in to escort family members out of the emergency department.

Also it is important to hire an attorney and have all legal paperwork signed
for Power of Attorney, Health care POA and so on so these documents are available to assist you during this tiring process. It is imperative that a Will be available for the Attorney to assist in legal matters at time of death.

Hope this response can help you in some way....

CA
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JuliaH Feb 17, 2024
Are we related??? I think we all are when it comes to dealing with family members. Nothing complicates matters worse than family in the middle of caregiving. Mom passed away in October and I can't wait to get everything settled so I can disown one of my brothers. Yes, tiring process indeed!
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Yepper that’s what EVERY ONE says in the beginning. Think of it this way I’ve seen hips give out, knees, backs, etc…. TRUST US this is only going to get worse. AND AND IF some thing happens to you the family will always find a way to disappear when called on to help. I am speaking from MY experience it’s happening NOW !
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Pick a date when you are leaving. Inform everyone. Then leave. See what happens.
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JanWin Feb 18, 2024
Wow! This is the answer, albeit quite brazen, it is brave.
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Call me and we can talk. my name is Debra and I have over 40 yrs experience dealing with this situation . If you don’t want to talk I fully understand. Remember how wonderful you are God Bless
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Don't let the family continue to take advantage of you and do not move your mother into your own home. The choices are between hiring enough in-home care in her own home to meet her increasing needs and moving her into a care facility. If she has adequate resources for in-home care, she might prefer that, but it needs to be professional help, not just you or the family (if they are in the mood.) As long as you are there taking care of things, the family will rely on you tokeep doing that.
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you can lead a horse to water but...
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Jen418,
Whatever you do, you need to have family agreement. This road is quite long, if she gets another stroke and becomes completely bedridden, the whole story gets to a higher level of complication and care requirements.

Apparently, there are too many decision makers in the family. These types of people who are sitting on the side and have wonderful ideas, have really no clue as to what it takes to provide the necessary care. But they are able to point a finger and accuse you of all that you did wrong and the mistakes you made.

In your shoes, I would not move my mom. Clearly, there should be understanding between the caretakers and those who have a vested interest (financial or otherwise) before you assume the responsibility of the main caregiver. There will be additional care costs, you may need to hire someone to help, place your mom, and so many other decisions that probably you cannot make on your own.
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Please do not move her into your house. That's a bad idea. Here's what you should offer.

Find a care facility near to you that she can be placed in. This is what you offer.

If she wants to stay in her home and the family along with her main caregiver think they can handle her, there will be no stopping them. So step aside and let them try.

I did in-home caregiving for 25 years and am now in the business of it. So I'm going to speak from experience because I've seen every family dynamic there is. Families start out with the best of intentions when it comes to taking care of an elder or an invalid. But the road to hell is paved with good intentions. Remember that.

Make yourself plain to everyone that when the sh*t hits the fan (and it most certainly will) and everyone is "burned out" make it known to all parties that you will not step in and handle it.

Your mother belongs in managed care. She is fortunate to have you and a family that cares about her. If she is placed all of you can visit, help her, and be in her life. She will need all of you to be.

Offer to find a good facility to place her in so she can get the care she needs. Good luck.
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