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.
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!
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.
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??
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!)
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.
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.
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.
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.
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
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.
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.
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.
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.