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My father was put in a NH for rehab now it would be in his best interest to remain long term he is only 77 years old, over past month he’s had a sudden decline in his health due to multiple strokes and severe heart failure and dementia. His body is extremely weak, and is mostly required to use a wheelchair for safety instead of his walker, his mind comes and goes, and relies on the nurses to dress, bath him. Sits sits around with his head slumped over all of the time and does not have any desire to walk around and socialize. He wants to move with me but I’m not physically able to care for him with all of his needs. I feel so guilty about this, he does not want to stay at the nursing facility and I worry about what he’s going through and struggle with the decisions I have to make for his wellbeing because he does not think he’s that sick. What do I do to accept the right choices without feeling so very guilty.

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I based keeping my Husband home or placing him on 1 factor.
Safety
If he was not safe with me caring for him at home ...I would have had to place him in Memory Care
If I was not safe caring for him at home ....I would have had to place him in Memory Care.
Luckily I have a house that was built accessible so barriers were not a problem but if we had been where we were previously the house would have had to have been adapted for him. I specifically looked for a house with no barriers. (Not easy to find)

So...
If you can not care for him safely or if he can not afford to have caregivers come in and help, if the house is not safe, if he is not safe, if you are not safe caring for him then placing him in a facility that can care for him safely is the only answer.
I have to ask...Is he a Veteran? If so the VA might be able to help with adaptations to the house. If he is a Veteran depending on where and when he served it is possible that some of the conditions he has MIGHT be related and if so he might qualify for a little or a LOT of other help. Well worth looking into!
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Like you and so many others here, guilt seems to be a given when we have to make this kind of decision. But when I look at my Mom's situation objectively, I know the SNF is the safest place for her. We tried both AL and Memory Care and she had falls in both locations which put her in the SNF. We had to make a decision on whether she would stay there after rehab and realized having eyes on her and help right outside her door was the best solution. She also has other health issues that can be handled at the facility without having to take her out to a lab or doctor (and having to make a decision every time if it was necessary). When I see how many blood tests she's had over the last couple of months, I know each one of those would've meant a trip to the doctor or lab in the cold and snow - uncomfortable for her at best and dangerous at worst. And, I might not have known she even needed them. They also caught a serious heart issue early and she's on meds that have put her on a better path for now.

Even knowing all this, I can't always stop the feelings of guilt. But you have the best interests of your Dad at heart and that might help you get past those feelings, at least for a little while. I hope so. Hugs to you.
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You must not feel guilty, else it eats you up. He's in the Nursing Home for a reason.
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If the bottom line is to put him in long term care, then go there (or get family members to go there) and spend a good deal of time with him. Find out what activities there are and go with him to help him meet people. Not all folks are social butterflies so it helps to get a person who is that personality time to help these shy ones get involved. It might not take with him, but it might. You have nothing to lose but the hours you spend partaking of the activities.

You're going to feel guilty. No way around that. But if you can't do the caregiving and no one else in the family can either, it sounds like long term care is a choice made by his decline in health. Perhaps telling him some physical therapy and movement will help improve his abilities to go home with some kind of in home caretaker assistance?? If that is possible??
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While it is easy to say don't feel guilty, we all know it is hard to get past that guilt! Most of us, if not all, have been on that lovely guilt trip! With trips like that, who needs a vacation???

What you have to do is try to offset the guilt with reasons why this is best for both of you. Even though he is older, he is still a man, more than likely heavier and bigger than you. What will you do if you both fall while you're trying to help him up? You might end up becoming his roomie at the NH!

As others asked, would he be slumped over at home too? A better wheelchair? Hire an aide for an hour or two to work with him/keep him company and more occupied? While many people will try to guilt us (yes, even on this forum) into thinking we *must* be the ones to do the care, understand that sometimes it just isn't possible. You have a job, maybe kids to care for, don't have the room and/or physical capability to provide the care needed. Sometimes that care CAN go on for many years. Finding an appropriate place, watching over them to ensure he gets good care and being his daughter, visiting and advocating are ALL part of providing care for someone.

When he begs you to take him home, try to change the subject to something else, divert attention to a snack, coffee, activity of some kind, even just to take him for a walk in his wheelchair. Although some label it "false hope", is there really any harm in encouraging someone to work on getting stronger and more capable? If they work at it, with the goal of getting home, that goal can be reduced to making small steps, eventually being able to get into a car for a quick outing, etc. The goals should be broken into smaller achievements - babies have to learn to crawl before they can walk (usually!)
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I have been exactly where you are. I will tell you... I wish I had done it all sooner.
My health has deteriorated over the last 7 years, with both parents declining and like your dad, not wanting to go to a facility.
We went through bad caregivers, hospice at home, scary times when electricity went out at their home (I’m an only child living 2 hours away) many, many rehab stays. My words of advice: let him be in the nicest facility you can afford.
There will still be oodles of paperwork, meetings, etc. but you can go back to somewhat being his daughter. Enjoying one another.
For me, not having to worry when caregivers would not show up, when dad would get confused and try to stand, caregivers bickering, a wheelchair not working, etc. has been a life saver.
I love my parents so much, and I know you love your dad. My body had taken a blow from the years of trauma and constant worry. Chronic disease and living through cancer treatment along with the caregiving was devastating. Turn the day to day care over to a facility where you will not be constantly worrying about what’s go to happen if a caregiver does not show up, or takes money or does not fold the laundry.
I'm sure your dad would rather make sure he still has his daughter alive and visiting. I may be projecting, but I remember feeling that guilt, and want to share a bit of my story to show not all facilities are awful. My parents have been making friends, love the food, are always clean, and enjoy the activities. You’ll make the best decision for you both.
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Caregiving can often begin with the thought that it is short term for a specific illness or weakness. Then other things happen. The caregiving stretches on for years, decades. My sisters and I have been caring for our mother in her home for more than 10 years now. She probably should have gone into some kind of residential care years ago, but the changes have been small, if steady, and no one change seemed to warrant a big flap over Mom's location. Each of us have sworn that we will not do this to our own children, that we will move to residential care before we get dependent on our children's care. Mom throws a fit every time the topic comes up, but she really would be better off in a place where she would have help when she falls, where someone else would prepare her meals and clean, etc.

You are doing the right thing. Take care of him by visiting him and making his remaining life a thing of joy to you both. It is much better than destroying your own health and coming to resent the fact that his life is destroying your life. I often wish, when it is my day with Mom, that I could simply go visit her and enjoy the time rather than exhausting myself with chores that I am really not able to do well anymore.

I do understand why your father does not want to stay in the NH. None of us really like such institutions, however nice they might be and however nice the staff may be. However, he is where he belongs and, believe me, you will help him more by taking care of yourself so that you can give him your love and enjoy the hours you spend with him. Be firm. It is for him as well as for you.
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Don’t feel guilty, the decision for the nursing home is right. Sometimes love requires hard decisions, you recognize that you would be unable to give him the amount of care he requires. Just be sure to visit him often and make friends with the staff.
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Hi! We recently placed my grandmother in AL Memory Care. She doesn't want to be there and wants to go back home, so I can totally feel your pain as you face this decision. It's so difficult to be in this position, because what you know is a logical and sound choice is directly in conflict with your desire to make your LO happy. The staff at our facility and my gramma's doctor helped us come to peace with this by telling us that our first duty was to provide for Gramma's physical needs. Her preferences can surely factor into things where and when we can accommodate them, but the physical needs come first. It is really pretty straightforward.

Your guilt is normal, but completely unhelpful to both you and your dad. In placing him where he can get the best care possible, you are really showing an amazing amount of strength and love. And continuing to be a constant presence, overseeing his care in the facility and making sure he gets the best of what's available is also a gift of love that you are able to give every day - but in a way that doesn't destroy your own health and wellbeing. I hope this helps you.
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cherokeegrrl54 Feb 2020
Very helpful advice to us all. Thank you...
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None of us want to be in the position your father is in, but should it happen to me, I will not expect my daughter to kill herself trying to keep me at home.  It wouldn't be fair to her.  It is a lot to bring someone with his needs into your home.  I am sorry your father's health has declined to this point and he is only 77!  By todays standards, that's not that old.  You can feel sad for him but please try not to let the guilt eat you up.  That is what these facilities are for.  Your due diligence is finding one that is clean and safe and hopefully close by so that you can make sure they are doing what they need to be doing for him.  Get him what he needs, visit as often as you can.... that is what you can do for your father.  Running yourself into the ground is not the answer and it will not change his situation, it will only worsen yours.
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RoyaB19 Feb 2020
Thank you so much for saying this. I’m about to enter my parents into assisted living for the second time and of course I’m feeling guilty because it will be different from what they have now. But what they have now is not sustainable — for me.
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Ask yourself:
Can I lift him with minimal assistance from devices like they have in the facility?
Can I do all the tasks that the staff do at the facility?
Can I provide diversions and social opportunities -like taking him grocery shopping, to church, to movies... without assistance?
Can I afford to be24/7 caregiver?
Mentally, am I OK with this being my life?

If the majority of your answers are "NO!", then he is better off where he is. Try to visit and bring variety into his life: his favorite cologne, a treat that is OK for his diet, music, a movie to watch together, a friend to visit with him, cards for holidays, pictures of family - especially grandchildren... Bringing positive experiences into his life can be your area of expertise.
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RoyaB19 Feb 2020
good advice. It’s a way bigger job than we tend to think it is. And it will eat up your life completely.
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He is better off with 24/7 care and will need two people to move him. If he continues to ask to live with you, place the responsibility on him. Use it as a motivation for him to work at getting stronger by participating in facility activities and restorative therapy. If he get strong enough, you might be able to take him out for a ride in the car or lunch out. That activity which is a form of occupational therapy will be beneficial to him and a physical reminder for you about the reality of caring for him. Please don't feel guilty. There are many ways in which to help him be the best he can while in facility. I encouraged my dad to attend restorative therapy by going to the class with him. He actually enjoyed the class and began to attend (most times) on his own. I did see an improvement in his physical and mental well being and he could feel it too.
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RoyaB19 Feb 2020
Excellent advice. Provide a goal and see if he can get motivated to reach it. Definitely taking him out when possible.
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I don't think it's a good idea for him to be in your home. Do you want someone just sitting there with their head slumped over?
It's difficult for them to be in a facility, but it would be difficult anywhere, especially if they are very weak. I know from experience. My dad at home sits like that. He recently got very weak. It's difficult for him to stand so I help him stand.

Big hug, I wish you and yours all the best
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Please do not feel guilty. His level of care has become far beyond what you can manage and it would unsafe for him to remain at home. You are doing the best thing for him by placing him in a facility.
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If he has to stay at a home you will feel guilty as there is no way around it.

A lot of people in Nursing homes do not mingle and just sit with their head leaning down as they are depressed. A lot of things can go on at Nursing Homes, especially regarding Patients that arent very mobil and have dementia as they can't remember to tell of their mistreatment and a lot of times they are too scared to tell. Please, if you have no other choice but to leave him in a home, Please Install a Camera in his room so you can at least check on him while he's in his room. Not all Caregivers are good people. There has even been ones to take certain meds that are suppose to be given to the patient like pain pills.

If you ca, see if your Dad can stay in his own home and get In Home Care for several hours a day and get him the Alert Necklace to wear in case of a Fall. If he's been in the Military, you may call them for support. Or, have you thought if your Dad could stay with you if he had Caregivers to help out. Also, if your Dad does get to go back to his own home and have In Home Care, you should also install a camera in his Bedroom and one in the main rooms that he will be in like the eating area and TV room.

My Dad who is now 95 wanted to stay in his own home and has Caregivers 24 7 which you have to pay for and is anywhere from $8 an hr to $25 hr if you go to Care.com you can look at the ones seeking employment.

Call your Dad's Insurance Co and see if they Provide Home Health or an Aspire Program, I have my Dad on both. He gets a Nurse to come out once a month to change his Cathiter. You have a Nurse you can call anytime and will come out again during the month if needed. My Dad also has a Nurse Practitioner that comes out once a month to check him out and she can prescribe meds. Your Dad can also get Aides to come help with his Baths 2 times a week and he has Therapy at home, all paid by his own Insurance Co. So, please check and consider him living with you if you have an extra Bedroom or letting him at least try staying at his own home with a Caregiver.

Lately, I'm considering a Live In for my Dad as that would be less expensive than hiring a few Caregivers to do 24 - 7 Care.
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Missfideldd Feb 2020
Good answer here. My mom is 97 w dementia and crazy bp. My doctor warned early that mom would not last 2 months in NH. I lived w her in rehab recovering from hip surgery. I made my decision to bring her home based on what I saw and experienced by neglectful aides. It’s been 2 years at home and she is doing well. Glad I did it and hired aides via LTC Ins I bought years ago.
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I'm so sorry you are going through this. He is better off in a nursing home if you are unable to properly care for him. "He does not have the desire to walk" -- means he lost his independence and therefore became an invalid.
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Nnursing facility care is needed when a person cannot safely live at home or able to provide self care. Nursing facility care is also needed when family members are unable to provide care or the person who needs care cannot afford live in 24 hour care. Incontinence and falls are also a factor. That being said these decisions are not without emotion. You love the person; you don't want to see them hurt,sad,or upset. I guess the best thing to do is realize that you're doing the best that you can with your abilities and support your loved one as best as you can.
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My rule of thumb is if they can't move around their living quarters, cannot get up from a chair or bed alone, cannot toilet themselves, or have dementia issues that are dangerous like leaving stoves on or wandering outside aimlessly; it's time for a facility.
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You have answered the Question Tina when you stated that you are not physically able to Care for your Father with all of His kneed's. Please avoid Self blame and know that your Dad is receiving the very best of Care from professional personnel at Rehab. Do not allow guilt to strike you now as We must always know our limitations.
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I’m sorry you are feeling the despair so many of us feel when the decision comes down to this. My father also was placed in LTC or NH once he couldn’t rehab enough to walk again. His ALF would not take him back. Did either of us want this outcome? No! But as they say, it is what it is. He has come to terms with it now.
He hated it, yelled at me for putting him there, it was all my fault etc. etc. Make sure to get him an assistive lift chair so he can sit in that to watch tv and get him out of his wheelchair. The squeaky wheel gets the grease and believe me, I and my sister squeak loudly when we see things that aren’t right at his NH. Do not accept him just sitting in his wheelchair, slumped. Tell them you want him in his recliner or the bed after meals.
For those that think a NH placement makes life easy on the caregiver, yes in some ways it does. However, you still need to visit, assess his care, and manage his things.
This is the time you will find you have to think with your head not your heart. I wish you the best.
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They are better off in a NH when their care needs can be met more easily there, or when the caregiver is stretched so thin that compassion has died and care suffers as a result.
The nursing home had lifts to help place my mother in her wheelchair without risking strain or injury to her or her helper, a big sauna tub where she had her baths twice weekly, a dining room to offer a varied menu, RNs immediately available and doctors on call as needed - in all these ways the care she received was superior to anything I could give her at home.

You mention your dad is sitting slumped over in his wheelchair - this is something I see often and it drives me batty. If he is going to spend the majority of his days in a wheelchair please consider having him fitted for a higher end chair that can give him both comfort and support - one with a headrest, stability backrest, pressure relieving seat cushion (consider a ROHO), tilt in place so he can recline and rest there.
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I’m sorry you’re dealing with this. Your dad’s care has become too much for you to handle in home, and you’ll have to accept that this isn’t what anyone wanted but it’s where you are and it’s okay. Please don’t keep discussing it with your father, it will make him concentrate on the topic and not move on to adjusting to his new life where he is. When you visit take him for walks and to available activities, keep it positive and light. If he persists in wanting to leave for your home, don’t get trapped into the discussion, change the subject, if he keeps on, then leave. Encourage him all you can in his new place. Talk to the activities director about trying to get him involved and any possible friends for him there that he could meet of eat meals with. Spending time feeling guilty is spinning your wheels, you’re still a caregiver, in an advocate role now. My mother was in a NH for 4 years, in rotten circumstances, we found it key to keep positive and encouraging and not give false hope of coming home. I wish you the best, I know it’s hard
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You HAVE to think of yourself and YOUR health. The majority of us with elderly parents are no longer spring chickens ourselves, therefore unable to do the lifting and pulling that is frequently necessary in the daily assistance of a bed bound or wheelchair bound person. One is practically BEGGING for a back injury when they take on this job alone at home. The majority of people do not have hospital beds, hoyer lifts, lift chairs, etc. and rely on muscle. And do not even get me started on the soul-crushing stress!

Frequent visits to the NH at random times will help keep staff on their toes and tending to his needs. Believe me, they KNOW which patients have family members who are involved.

Let go of the guilt and do the best that you can.
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Tina, yes, this is so hard but you are not alone! Many have gone before you and many will post that you should not move him into your home. You are absolutely correct in seeing that his medical needs cannot be met at home by you. Often the older generation has a concept of NHs being just horrible and today that is less the case. Shop for a reputable local one. Take your own pictures to show him how nice it is. He still won't like it, but there really aren't other choices. In-home care for him would be just as expensive and a burden to manage. I hope you have his durable PoA and that he has the financial means necessary. If not, come back here for further insights. May you receive peace in your heart that this is the best decision for the both of you.
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