My husband is 87. He has a feeding tube that was placed for dysphagia in mid-January 2024. He’s pulled his feeding tube out 4 times over the last year. He pulls the tube out because he thinks he can get enough water and nutrients by mouth, even though his last 3 swallow tests show he aspirates anything he takes by mouth. He doesn’t get his medications either because they are administered through the tube.
He gets dehydrated and disoriented and I have to call the EMS to take him to the hospital. He’s admitted, has s new tube placed and went to a SNF three times. The other time he came straight home. He’s in the third SNF now and wants to come home.
I’m the only caregiver. I had to learn how to crush medicine and administer it and his formula and water through the tube 4 times a day. This was quite a big deal because the hospitals don’t give enough info to get you all set to do this nursing function at home.
The SNF he’s in right now says he’s fine to come home because he can walk well with his walker and dress himself. They are doing another swallow test this Friday and want to see if he can eat enough to get off the feeding tube. Wishful thinking.
The social worker and the head of the therapy dept. called me today and said he’s ready to be discharged. He took a cognitive test while he’s been there and scored well. He comes in and out though. Two months ago found him outside in the driveway, in my car, waiting for me to take him home. And he put the dog in the car with him and it was 87 degrees out.
He also goes into the bathroom and sits there for two hours at a time. I can’t get him out of there even when it’s time to for a feeding and it messes up the schedule. We feed 4x a day.
He pulls it together when he’s in a SNF so they’ll send him home. Then he’ll sit in his recliner all day and ask me to bring him things he forgot in another room, etc. I feel like a servant.
The feedings are every 4 hours, so with prep time of 30 min. and cleanup after, I end up with only 2 1/2 hours to do something I need to do. I did hire a home health aide from noon to six pm to do 2 feedings a day, but if he won’t get off the pot, she can’t stay past six and I end up doing the feeding.
Then I have the worry of him getting out of the house or burning it down or letting the dog out. I’ve put an alarm on all exterior doors, but still.
I’m exhausted. He’s also been in the hospital for two UTI’s and a virus. A total of 9 hospital visits since Mid-January.
The social worker said if they have a functioning person in LTC the person doesn’t “thrive” and he or she gets depressed. She suggested he might get involved with handling part of the feedings to ease my burden. Dream on. She has no idea what I’m facing. I’m depressed!
I feel really guilty not wanting him to come home especially at Christmastime, but I just can’t do it anymore. He’ll just have another incident and its back to the hospital, SNF/Rehab and home. I’ve got him all set to go to their LTC unit and we have LTC insurance that will pay about 75% of the cost. I don’t want to have to go through this a fourth time.
How can I get him to understand he needs to stay there to get the 24 hr care he needs. He believes me about his wandering, because I took videos. I didn’t like to, but when the EMS came he’d “showtime” and one of them actually said I was “overreacting”! So I showed them the videos.
My sister says the social workers don’t know the half of it and only see what happens at the SNF and they’re just ticking off the boxes.
Any suggestions on how to get him to understand I don’t want him to come home. That sounds cruel, but I have to think of myself and my health. I’m 73.
Tell the SWs that to discharge him to home is an unsafe discharge. You refuse to be a part of it.
You are not cruel at all. You're thinking of him and what he needs, which is not escaping from your home, not doing his own tube feedings (absolutely impossible if he pulls out his feeding tubes), not wandering, and stop endangering himself and the dog. On top of all that, he might burn the house down with you and the dog in it. He belongs in a locked unit somewhere.
I hope you can place him where he needs to be so you and the dog can have a merry Christmas!
They will then have to help you find the right facility to place him in, or perhaps even keep him where he's at right now.
And of course your husband wants to come home, as said no one ever that they wanted to spend out their days in a nursing facility. But it comes down to what is best for all involved and that includes you, so if your husbands care is now too much for you, it means that his caregiving is no longer working, period.
So I wish you well in getting your husband placed in the right facility where you can get back to just being his loving wife and advocate, and not his overwhelmed and burned out caregiver.
Don't try this.
I am so dreadfully sorry.
So much do hubby and I fear this being our last time that we have adamantly and clearly made our advance directives, now in our charts, clear that we will accept no artificial means of introducing sustenance via IV or NG or PEG tubes. That when we cannot take in our own food, chew, swallow and digest it, we wish to go by VSED or voluntarily stopping eating and drinking, with the help of hospice.
Your hubby wishes to live on. But he now needs more care. Tell him you will visit and support him but that's the best you can do.
There's no easy or comforting or comfortable or good answer now. All the answers are sad. He needs placement now permanently. You will visit and be supportive in that way. There is/was no real choice her. He will grieve this and you will grieve this and this is well worth grieving.
I am just so sorry.