This week I took DH to the doctor for some nagging physical issues, including a sore that wasn't healing well. I told the doctor that I wanted to stay on top of all the different problems now, because if DH was in a nursing home in the future, I was afraid that the nursing home wouldn't bother to take care of all these things. He looked me right in the eye and said, "You're right. They won't." Chills ran down my spine when he said that.
The main thing that has kept me from placing DH in permanent care is the fear that the "care" he would receive there would be so bad that he would suffer even more than he is already, and ultimately, that the lack of care would hasten his death. What the doctor said seemed to confirm these fears.
DH has been in three different nursing homes for respite. At two of these "nice" nursing homes the care was really substandard, including issues like not administering meds and not bringing meals, and bathrooms liberally decorated with the roommate's poop. One nursing home was so bad that I had to bring him home early. The third nursing home was really old and run down, and I questioned whether they had the facilities to care for seriously ill people.
I know that people say that nursing home care won't be "perfect", but these places were far, far from perfect. There was ongoing neglect. And this was before DH really needed much hands-on care. What must it be like for truly helpless people in these places? (Why do they call them "nursing" homes? The ones we've seen--up close and personal--were more like warehouses where they stored people until they died.)
Until this last doctor's visit, I kept telling myself that I was worried for no reason, and that nursing home care wouldn't be as bad as I thought. Now I can no longer think that. Now I'm even more afraid of nursing homes for DH.
Sadly, he is right. And more sadly, the oversight system isn't working. Many nursing homes used to be run by charitable organizations. Once it all became big business there was no line item for "caring" on their balance sheets.
Finally a light is being shined on the VA system, but NH are still in the dark.
I would like to see celebrity photo ops feeding patients, cutting their nails, making beds. But, no, PR "looks" better to have a sick kid or a cute work hat in the picture.
"Care homes" might be an option - we have them in our state. They are licensed to care for a certain number of people who live in the home with homeowners who do much of the care but also have help who comes in. My sister's FIL who had alzheimers lived in one of those when they couldn't care for him anymore and he was treated beautifully as if he was a member of the other family. And they really did a good job.
Jan K, unfortunately your doctor was correct. And to "Just Thinking"--As far as I know from my experiences in health care in one state, family care homes can be one solution, but they do not provide nursing home level of care--they are more like adult homes or possibly assisted livings.
Jan K, I struggle with this every day. My husband is still at home and we have a live-in (which BTW is NOT 24/7 care because of laws). He is difficult to do any personal care (toileting, bathing, dressing, shaving, etc) and can be combative if forced or hurried to do something he doesn't want to do. But he is well fed, well taken care of physically and several medical professionals have told me that he would be dead by now if he was in institutional care. He spent 35 days last year in a NH dementia secured unit while rehabbing from knee surgery. He seemed to enjoy the activities and having other people around him, but the personal care was atrocious. My estimation as to why is that he is difficult to begin with and they are understaffed and don't have an hour to deal with him to get him clean. The facility is rated 5 stars by the govt. but honestly, altho he was in a dementia unit, they only knew how to care for compliant residents. When he was difficult at bedtime, they called me to come in because they couldn't/wouldn't handle him. Okay, so does that mean you credit me with 3 hours on the bill for not providing care? NOT.
So socially I think he would be better off in a facility, but nothing has shown me that he would be better off physically. Right now, that's a deal breaker for me. And by now, we've seen a lot of medical professionals and they seem to think he would not receive good care and could possibly be dead by now. Oh, his brother was dx'd at the same time and put in an NH immediately. He died 1 year and 9 months later.
I volunteer for hospice in a local skilled nursing facility. As I spend a lot of time there I get to see a lot of what goes on. I am pleasantly surprised how well the residents are treated and the respect shown. The activity person knows every resident, their likes and dislikes and sometimes their fears. It's not the prettiest place I've ever seen. Very few residents spend their day in bed alone. Most are in the day room or grouped near the nurses' station where the staff stop to chat.
Bluedaze, when DH was in the Rehab, yes, the two activity directors were lovely and caring. But the hands-on personal care--or lack of it--was heartbreaking. He was routinely in stained clothing, unshaven, hair not combed, brown food-blob stains on teeth and around mouth…incontinent because they would not come soon enough to toilet him, and was given crushed medications because nurse said he could not swallow meds. It was for her convenience, so she could shove them all down his throat at once. He swallows pills just fine, and is, yes, occasionally incontinent--but for the most part he makes it to the toilet if assisted. I am afraid to place him, either for respite or permanently. Home life is like Alcatraz, but as LFL said about her husband…same thing with us. He is well-fed with his personal preferences, has good personal care and grooming, has a pleasant, comfortable environment to live in (screened porch, his favorite couch, what he wants on TV, etc.) and has people who love him taking care of him, although I'm about ready to drop down dead. How could I in good conscience place him, knowing what I know? I think we will go to much higher aide hours when necessary, although that can bring a whole new set of issues.
I'm having a bad day, but that doesn't mitigate my reality. We live in Alcatraz but he is shaven, well fed, no infections of any kind, no s**t in his butt checks,his pants or bed. I know many here have found wonderful, caring homes which take great care of their LO's but sadly I haven't found one yet. So, Alcatraz it is. At least he's not dead.
My DH has been in a NH for a year. I cannot say one bad thing about his care.He is very happy there.Everyone from kitchen help tomaintenance know him by name and say hello every time they pass by him.It is a family owned home,has ony 85 beds.He is always shaven and clean.The food is really good and always hot.If there is nothing he likes on daily menu there are soups,sandwiches and salads to pick from.Snacks are offered during the day and I am free to help my self to anything in the area kitchen.Our Elder Attorney steered us away from the faith based homes,said they wanted too much money up front and care wasn't any better.The nurse calls me if there is the slightest break in DH skin or even for the tiniest bruise.When I had surgery recently they called me twice to see if I was OK.I see how all the residents are so well cared for,even those who have no family checking on them.Yes, it would have been nice to be able to keep him at home,but since that was not possible since it takes three to transfer him or shower him,etc. I really feel as though I made the right choice.
I wonder what the cost comparison would be, then, of NH to having in home where you can be there and can see what is going on? Unless your husband needs additional medical care that cannot be managed or done at home, maybe that is something to consider. I was facing that problem before it was suddenly taken out of my hands.
You have to consider how many shifts you want at home. If the person needs full time care then 3 shifts at 8 hours each. My MIL had this the last few months of her life, and perhaps needed it earlier. You now have to monitor the employees and be ready to fire and hire as needed. After hiring the nurses and moving into another bedroom (the family bed was replaced with a hospital bed) my FIL got his first complete night's sleep in years.
I think that is about the worse case scenario. You might just need someone for 8 hours a day and do the rest yourself. But do consider how many hours of help and managing that help. Balance that against having to monitor the ALF or NH, both might be equal work.
Make sure your insurance covers people working in your home.
We have a live-in aide which means they are technically "on-duty" 12-14 hours a day, depending on your state laws and the agency policy (that is if you hire from an agency which is more expensive than hiring privately). And they are required to have a minimum # of hours of uninteruped sleep (in NJ it's 5 hours/day) In the Northeast the daily rate (through an agency) is $200-$255/day, probably higher closer to NYC. As paulc says, if the person requires around the clock care then you would need to hire 2 people for 12 hour shifts or 3 people for 8 hour shifts.
For us, the cost of a live-in through an agency is equivalent to the annual cost of an ALF. It is significantly less expensive than skilled nursing home care. Thankfully at this point my husband doesn't need skilled nursing care.