I have been staying with my in-laws for many years alongside my husband and now three year old son. My mother-in-law had been disabled for all throughout and that is what influenced me and my husband's decision to stay with them to help her get around. She recently passed away in mid summer from a heart attack. My father-in-law was there to witness her death. Me and my husband helped him with all the funeral arrangements and paperwork. We were there for him throughout all this. Late Summer came around and he had a severe gout attack in his left knee. Long story short, since then he has been to hospital after hospital, facility to facility being treated with pneumonia (which he has gotten like three times already) and a large pressure sore on his backside which is what really started the whole downward spiral in his health and mobility. Anyway He is at a rehab/assisted nursing facility currently to undergo PT which isn't going so well. He has utterly been traumatized by the whole ordeal and the social worker there has been complaining he has disruptive behaviors. I have a feeling they will be discharging him earlier than expected. I have no experience in care giving whatsoever and I'm frankly scared to death of it. He has a PEG tube, an oxygen tube and is most likely gonna need a wound-vac as well when he comes home. He complains so much about the pain and is not cooperating with the therapy either. I don't see how things are going to be different when he comes home. He is such a stubborn person. He most likely will still be fully bedridden.
I have no idea how I'm gonna care for my father-in-law as well as a three year old, which is hyper active to be honest, it's a full time job taking care of the little one, but a bedridden adult?
I think you have already decided this would be too much responsibility along with caring for your three year old child and frankly I agree. A three year old will keep you very busy. He needs you to be his parent. He deserves to have you caring for him. Even if he goes to preschool or daycare he still needs you afterwards so how can you responsibly care for your young son and a stubborn senior citizen? You can’t!
Have you discussed this with your spouse? You need to tell your spouse that your primary responsibility is to your son.
Can you begin to look at facilities now?
I think the best place to start is to speak immediately to the social worker at the place where he is. Please be honest and say there is no way that he can be released to your home because his care will be too great. I wouldn’t even bring up his temperament. Don’t make it about his personality. Present it as a medical situation. Tell them you have a very young child to care for and that he is your primary responsibility.
Ask the social worker to recommend a suitable placement for him. Then go check it out yourself with your spouse and see how you feel about it. If it isn’t to your liking then look further until you find a suitable place for him.
Tell your father in law it is in his best interest to be cared for by a professional staff that are properly trained in caring for his medical needs. This way you are not directly saying that you don’t want to care for him because of fear of doing so. You can also tell him if you wish to tell him that it simply isn’t possible because you have to be there 100 percent for your young son. If he doesn’t understand that he is being completely selfish.
You’re in a difficult position. I wish you well. Your child comes first and you would regret it horribly if you were not able to be the parent that he deserves.
You love your son and don’t want to miss out being an active parent in his life. We only get one childhood and it’s so important to be there for him during his formative years. He is your responsibility until he leaves for college.
I believe you care about your elderly family member or you wouldn’t be inquiring what is best. You can visit him and be an advocate for him in the facility where he is placed.
Before he is discharged, speak frankly with the discharge planner and social worker st the facility. Explain you are very hesitant to bring him into your home with his medical and behavioral issues. He needs to be in a skilled nursing facility. They will assure you they will “train” you how to care for him, but in my experience, the training is minimal and once you’re on your own with him, you’ll realize bringing him home was a big mistake.
In my opinion it is the only answer on every level, for the elder involved, the child and of course the parents who would have an enormous responsibility of caregiving to an elder with more issues than they are capable of providing good care for.
This isn’t something as simple as caring for someone with a sprained ankle. It’s way more complex than that.
I encourage you to engage with the social worker to plan his discharge to a facility able to meet FIL's medical treatment needs, which is probably a NH at this point. He may get well enough to move from NH to AL or IL at some later time. But he's not healthy enough now to care for at home. I say this as someone who cares for my mother with MCI and no medical needs living with me in my home. We are visited nearly everyday by my just turned 5 year old grand-nephew (lives next door). I occasionally baby sit for a few days when his parents are out of town and it's challenging at times to take care of my mother and my favorite little guy concurrently like when the child is in the bathtub and Mom needs help getting up for a bathroom trip. Both need your attention and there's only one to go around.
Does he have an alternate pressure air mattress to help prevent bed sores? Is he getting wound care NOW?
Has hospice care been considered?
He needs placement in an LTC facility and medication management from a sympathetic geriatric psychiatrist or Nurse Practitioner.
Do NOT bring him home. Your child is your primary responsibility.
You need to tell the social worker and other rehab staff that you will not care for him, he needs more care than you are able to provide, so this is not a safe discharge.
Stick to your guns, they may try to manipulate you into changing your mind, family members may do the same.
Look yourself in the mirror and say " NO I WILL NOT AND AM NOT ABLE TO DO THIS"!
Repeat as often as necessary!
Love the suggestion of literally looking at oneself in the mirror! Such a great visual image.
After my mother, then my sister passed, my father undertook a major construction project. After a few months, he collapsed, was hospitalized, intubated and went through a cycle of several months in 4 hospitals and 1 rehab facility before coming home to stay with me.
I had very little experience in caring for anyone other than my sister, who had just died of cancer. Nor did I have any conception of the challenges I would face. I knew absolutely nothing of alternative options.
1. PEG Tube feeding: He was NPO, so ALL nutrition was through the PEG tube, every 4 hours, then a longer feeding about 1 a.m. for the overnight period. Then back up at 7 am for the cycle, all over again.
After about 2 months, I collapsed, overslept, missed the 7 am feeding, and also missed the funeral of my sister's closest friend. PEG tube need to be cleaned regularly; missing the 7am feeding caused it to clog or become blocked (I don't remember which now). It was easy to clean (w/apple juice if I remember correctly), but it caused some concern as it was a Saturday and if I needed help, I was out of luck.
When the liquid nutrition was first delivered, I had to clear out a closet, to accept 10 or 11 CASES of Nestle's ProBalance. It took up a LOT of space! Everything, equipment and all, needed to be on the first floor.
2. Oxygen was easy, compared to the PEG tube feeding and maintenance. You'd need a stationary concentrator and multiple E sized tanks with a rolling holder for walking, assuming home care PT would be taking him outdoors for walking exercise, and that you might have medical appointments out of the home.
The doctor prescribing the oxygen will arrange for a DME (durable medical equipment) supplier to deliver the oxygen and extra cannulas as well as the portable equipment. Ask for the little grey foam tubes to put on FIL's ear; they help prevent friction.
These DME folks and the home PT folks will probably become your best friends!
During our experience, there were no relatives to help, nor would they even if they were local. The home OT team nurse volunteered to handle the PEG tube feeding on the days she was present so I could rest.
I had donated the dogs to the Humane Society; I couldn't handle one of them who had a lot of emotional problems. But still, by the time the PEG tube was removed 4 months later, I was physically and mentally exhausted, and spent several weeks if not months just reading and resting.
I was 59 at the time. But it was such a challenge I feel fortunate that I didn't end up with any real physical complications beyond exhaustion.
Give the care issues some very, very serious thought. With a little one and a husband, and w/o any support, you're going to burn out very quickly, and probably end up in the hospital yourself.
It will be personally complicated though since you're living in FIL's home. And based on your description, he may feel that he has a right to demand that you provide care.
If you do feel pressured to accept this challenge, explore the idea of getting a home care company to help, but it will be private pay unless you can convince a doctor to script for longer term care for the PEG tube feeding issue.
If you do consider this route, make it very clear to any companies you interview that the person should preferably have PEG tube experience, although this can be learned (I'm not a medical person and after a few tries wasn't as uncomfortable with the process), you need to be comfortable in knowing that the person won't inject the liquid nutrition too fast (very important!) and will maintain the necessary cleanliness protocols. These are absolutely critical.
Actually, if you can find a retired or active duty nurse to help, that would be much better.
Your child has to come first. If your FIL comes home to your house with you as caregiver, HE will come first. You will quickly run yourself ragged trying to take care of him and your baby. In the beginning of all this crap with my FIL, my husband suggested that if FIL came home I could be his caregiver. I shut that down real quick. Not only am I totally unqualified and have ZERO medical experience, I wasn’t willing to do that kind of work, I wasn’t willing to change a grown mans diaper, didn’t want anything to do with the feeding tube because I had no experience with one. And there’s no shame in that. Not everyone is cut out to be a caregiver. And most importantly, I wasn’t willing to put him before my kids & that’s what would have happened had I agreed to be his caregiver. If it wasn’t for this forum, I probably would have agreed to it and all I can say is, I am so thankful I didn’t have to fall down that rabbit hole!
How was he throughout the time you have been there? I mean you didn't just move in and two year olds are just as needy as 3 year olds.
Of course he is traumatized. It seems he has ever been in a center before. He is scared. He may feel abandoned. It is possible to get home rehab and may progress quite well being at home. It isn't doom and gloom.
Seems like you have been doing it so far. Once the bed sore is healed he won't be in pain. I'm assuming that is causing his pain. His behavior could be his way of saying "kick me out." I want to go home.
Assuming he comes home get him to his regular doctor. That is where you begin. Get his input together with your husband. Make a short term loan and see how it goes. Right now you are afraid of the unknown.
GOD BLESS
I am sure that you have incredible love in your heart for the elder but let me speak from personal experience that when I bit off more than I could chew it was a terrible outcome for everyone. I burned out!
This is one of those situations where long term thinking and planning matters the most, not a short term impulsive decision where the adult children, a sweet innocent grandchild and the elder will suffer if the wrong decision of misguided compassion is made out of guilt or an unrealistic view of obligation.
No amount of wishful thinking or even prayer by itself can make this work. We can’t wish or pray for something to go away. The father’s medical situation is on the decline. We have to learn to accept the reality of what lies before us and plan accordingly.
Prayer can guide us but it isn’t meant to be looked at as magic. We have to use logic and reason along with prayers for the best outcome. It’s our responsibility to make tough choices when needed.
Of course the elder may be scared but the OP clearly has fear and concern too. Fortunately, she also has shown that she realizes this is too big of a challenge for her to meet.
She needs confirmation and validation of her genuine concerns. She needs support and encouragement. She needs to hear from others like me who were so well meaning but failed at their attempt of trying to be a super woman and being able to handle it all alone. No one can succeed in a situation like this. It’s too big of a sacrifice and too hefty of a price to pay.
It nearly killed me emotionally and physically so if I can prevent just one person from making the same mistake that I did, by God I will try to convince them with all my heart so they won’t endure the heartbreak that I am living through. Live and learn. Believe me if I could go back in time, I would make different choices and I would have better memories than I have now.
I sincerely hope that you will be able to see the flip side. I do appreciate your concern for the elder but being the caregiver isn’t the most viable option. She and her family simply should not take on a responsibility of this magnitude because it would have a negative effect on the entire family.
I want them to be able to look back and know that they made the best choice possible with no regrets or horrible memories. It doesn’t pay to second guess. The time to make the plan his future is now, not later. It is not a ‘wait and see’ situation.
The link posted above is a handbook for seniors in Tennessee from the Tennessee Bar Assicuation.
You might find it helpful.