breaking my heart

gentlegiver, ASN, LPN, RN · Aug 3, 2010

You can only do what is best for your Dad & your family. LTC is not all bad, there are some really good ones out there. But you have to look. Remember that you have to continue to be an advocate for your Dad, be very active in his continuing care. Visit often, and try not to keep a schedule about the visits. (The reasons for that are if they never know when you'll show up they will always take better care of Dad just in case you do "pop" in.) I work LTC and have seen patients given minimum care except on the days that family show up, sad really. It's a fight that is unfortunate, staffing is usually short, CNAs overworked & underpaid, Nurses trying to pass meds, do treatments, answer phones, admissions & discharges. Sadly it's the patients who get shorted when Admin. decides to save money. When looking for a setting for your Dad, talk to staff, observe them on an unscheduled visit. Admissions usually will paint a wonderful picture of staffing, activities & therapy. Believe what you see, not what you hear. That being said; LTC can be a great place for your Dad, most staff love thier charges, want and do to give the best care possible (treat your Dad like he was thier own). I have CNAs who spend thier own money on clothes & toiletries for their patients, Nurses who supply snacks or things not provided for by the company. They are good people, very dedicated in the love & care provided. Good luck in your decision, my prayers are with you and your family.

Penelope_Pitstop, BSN, RN · Aug 3, 2010

First of all, I am very sorry to hear that this has happened. I hope that you have a good support system in place, because you cannot go through any of this on your own!

I know, as nurses, it is especially difficult for us to be in these situations. We have expectations of ourselves and therefore believe everyone else has these expectations of us as well. We also know things others don't and therefore have a completely different outlook.

My advice to you is to step back and look at your father. If you were a nurse, not a loved one, of this man, what suggestions would you give his daughter?

Also, think of what would be best for your father, and also what you know he would want based on conversations you've had with him. What we want as daughters might not be what our fathers want, and this can be the most difficult part of it. I'm not saying this is true in your case, but it requires some consideration.

I wish you the best. Please keep us updated.

Michigan · Aug 3, 2010

First, I'm so sorry for what you are going thru. 2nd- once you've made a decision--DO NOT second guess yourself or let ANYONE put a guilt trip on you for you decision. Do not play the would've, should've game. Remember hindsight is always 20/20.

That said- I wonder about his pain control. CVI can be painful and of course his stress level is thru the ceiling. You didn't say if he was on any other pain/anxiety med- I would ask Dr. to consider a med review.

Consider LTC for a trial time, to give you time to do more research into your options. I work LTC and while I know bad LTC can be, I also there are plenty good ones with hard working, loving, caring staff.

Ask about your options for payment: MCare, maybe an option, it may pay due his skilled care need for a limited time (maybe enough for you to decide futher options). If you choose this route, you can be there as many times during the day or night as you feel you need to be to monitor his care.

Find a close friend (in my case I would probadly use my pastor) to monitor YOU- for increased stress and help your focus. Sometimes nurses make the worse family members, turning small problems into a huge crisis. (Please no one flame me. I know because I've done it myself. When your Mom is crying because of pain, you (I) didn't give a royal leap if another person needed help, or what was going on around the floor.) remember to step back and ask what if the roles were reversed (you was the nurse and you the nurse).

My Mom recently had a bad fall with 2 fractures. I stayed home with her for a long time (thank GOD for FMLA- you do have one right?) and sometimes in the middle of the night (funny how is worse in the night) I would cry thinking I was making a bad decision keeping Mom home and any nurse at the nursing home could take better care of her.

Again, so sorry for what you are going thru. I'll keep you my prayers.

Maco · Aug 3, 2010

The only other pain med/anxiety med he has it morphine in which i don't want him to have it because it will sedate him more.What do you think about maybe small dose xanax or do you think it would further sedate him. Before this happened he never took anything stronger than a tylenol.I also thought about he may be depressed. I read that pts with cva do have depression...but then I thought about how hard it is to find the right anti depressent and they also have alot of side effects...and it takes weeks for them to work.I always massage him and use warm compresses to his knee....but i can't stand to see him grimace when i try to move it.Ant advice on meds and also is it norn for someone to sleep 95% of the time after a cva. I was told that pts do sleep alot but it is has been a month now...I don't think he would want to be in a nursing home but I do want to give him at least a chance to regain anything be back.Im just scared one he gets in a nursing home he will give up.....

happy2learn · Aug 3, 2010

I'm so sorry to hear this. I can only imagine how hard this is for you.:hug:

While I'm sure we would all love to be able to have our parents home to take care of them in these situations, we need to think about what is best for them. It is hard to leave emotions out of our decision, but think about what is the best situation for your father. LTC is probably going to be his best option. And to be honest, it will be the safest option for him. He needs care 24/7 and no one person can provide that. It is not humanely possible.

Yes, you will have people that will disagree and will try to guilt trip you, but I guarantee if they were in your shoes, they would do the same. It's easy to pass judgment when you aren't in that person's position. It's easy to say that you can take care of someone 24/7 when you aren't faced with it. But the fact is, it's just not feasible.

That doesn't make you a bad person. This decision doesn't make you a bad daughter. It doesn't mean you don't care and it doesn't mean that you are selfish. It is the opposite. The decision you are going to make is one of the hardest you ever will.

My nurse aide teacher was actually making this decision while she was teaching our class. You could tell it was tearing her up. But she just kept saying how it is not safe for her father to not have care 24/7. It was not safe for him to be alone. That is the ultimate deciding factor.

I wish you the best.

Zookeeper3 · Aug 3, 2010

I am so sorry you and your dad and family are facing this! A brief note to help you understand where I'm coming from, not to redirect from your post.

my daughter, in a MVA had several subarachnoid bleeds at 18, its a bleeding stroke. Understand that instead of rehab (many, many broken bones and couldn't walk), as a nurse, I needed to take her home and care for her.

But then I couldn't work, our finances depend upon my pay. I realized I couldn't be the "bad" person to make her get up and do for herself, my heart was broken, I'm mom, not the bad guy... you're the daughter... not the "bad guy". To take dad home, you'd have to move him when it hurt, exercise him while exhausted, suction, do peg feeds, turn every two hours when he wants to sleep but pressure sores are waiting.

I learned there is a time to nurse, and a time to be family. I know, there is no way you are mentally healed to take this on, you're hell that you've been through is lurking and will hit you and make you face it then heal. Until then, your relationships will be strained, you'll be exhausted and you won't take care of you.

Can you honestly, honestly then, accepting that... take on dad, whom you love... into your home and provide that care? NO,,,, NO,,,, NO. That's why, we have trained professionals to do what we can't take on.

You are NOT a failure or less of a person because this is bigger than you and you need time to heal. You are NOT A NURSE, you are a grieving daughter whom needs help. You must first accept that help, visit often and add to dad's therapy until he is at a point.... and you and your family is at a point to take him home.

You may never get there, you may be there in a few weeks... but I'm an ICU nurse, I understand dads state and he requires more than you can do... accept that. Sending my daughter to rehab was the toughest thing I've ever done. Allowing others to demand her participation, her moving, her getting out of bed... was a tremendous relief, because I wasn't the bad guy... I was simply someone there to encourage and love her.

This is beyond you, and I promise it's ok, you and your family need time to heal, so you can be there for what dad needs LATER, just not now, it's not the time. Give yourself permission to be the daughter,not the nurse.

I'm thinking and praying for you.

Kyrshamarks, BSN, RN · Aug 3, 2010

I am going to play the devils advocate here on the sedation part. Remember that it is when the body is asleep that it trie to repair it self. The sedation at this time may be the brains way of saying I need time to try to fix myself. That may be what he needs at this point. I kn ow it is hard to come in and see him sleepping all the time and not able to do rehab but there is always PROM and look at this way, even of he is sleeping, You know that you are there with him. Let him have the morphine for pain right now. You are not helping him or yourself if he is not getting adequate pain relief at this point.

happy2learn · Aug 3, 2010

I am so sorry you and your dad and family are facing this! A brief note to help you understand where I'm coming from, not to redirect from your post.
my daughter, in a MVA had several subarachnoid bleeds at 18, its a bleeding stroke. Understand that instead of rehab (many, many broken bones and couldn't walk), as a nurse, I needed to take her home and care for her.
But then I couldn't work, our finances depend upon my pay. I realized I couldn't be the "bad" person to make her get up and do for herself, my heart was broken, I'm mom, not the bad guy... you're the daughter... not the "bad guy". To take dad home, you'd have to move him when it hurt, exercise him while exhausted, suction, do peg feeds, turn every two hours when he wants to sleep but pressure sores are waiting.
I learned there is a time to nurse, and a time to be family. I know, there is no way you are mentally healed to take this on, you're hell that you've been through is lurking and will hit you and make you face it then heal. Until then, your relationships will be strained, you'll be exhausted and you won't take care of you.
Can you honestly, honestly then, accepting that... take on dad, whom you love... into your home and provide that care? NO,,,, NO,,,, NO. That's why, we have trained professionals to do what we can't take on.
You are NOT a failure or less of a person because this is bigger than you and you need time to heal. You are NOT A NURSE, you are a grieving daughter whom needs help. You must first accept that help, visit often and add to dad's therapy until he is at a point.... and you and your family is at a point to take him home.
You may never get there, you may be there in a few weeks... but I'm an ICU nurse, I understand dads state and he requires more than you can do... accept that. Sending my daughter to rehab was the toughest thing I've ever done. Allowing others to demand her participation, her moving, her getting out of bed... was a tremendous relief, because I wasn't the bad guy... I was simply someone there to encourage and love her.
This is beyond you, and I promise it's ok, you and your family need time to heal, so you can be there for what dad needs LATER, just not now, it's not the time. Give yourself permission to be the daughter,not the nurse.
I'm thinking and praying for you.

What a strong, incredible mother you are. I don't think anyone could understand how hard that must have been, yet you have come out of it with such an amazing attitude. You are an inspiration.

happy2learn · Aug 3, 2010

What do you think about maybe small dose xanax or do you think it would further sedate him.

I think that would be a drastic difference from morphine to xanax. I'm sure there is a reason they have them on morphine.

There is going to be a point when you will need to stop the nurse in you from assessing him. You will need to learn to trust the people that are taking care of him, just as you would want a family to trust you to care for their family member.

Maco · Aug 3, 2010

Zookeeper you are so right. I cant turn him and move him like he needs to be only because i cant stand to see him in pain. I can even stand to watch him being lifted in the hoyer lift from the bed to the chair..but i feel like i need to be ther to make sure they are doing it right and to make sure he isn't being hurt..but i just cant watch it.I cant do therapy on him like he needs because i don't want to hurt him....but i know he has to have it..thank you for making me see that.

Zookeeper3 · Aug 3, 2010

I am going to play the devils advocate here on the sedation part. Remember that it is when the body is asleep that it trie to repair it self. The sedation at this time may be the brains way of saying I need time to try to fix myself. That may be what he needs at this point. I kn ow it is hard to come in and see him sleepping all the time and not able to do rehab but there is always PROM and look at this way, even of he is sleeping, You know that you are there with him. Let him have the morphine for pain right now. You are not helping him or yourself if he is not getting adequate pain relief at this point.

Thanks so much for adding that! PT, is notorious for saying pt. sleeping, pt. does not participate. Ensure, that passive range of motion to prevent contractures as well as foot drop boots or podus boots are included.

Also, consider joining a support group. Doesn't have to be face to face meetings, there are many on line. When I sleep and wake up I'll post some of my resources.

I swear, many trached and pegged patients return in a year walking in to the unit to show off. Oh, also consider a scopolamine patch to dry up secretions, if it works, it's wonderful. Plus make sure the docs are keeping dad on the "dry" side to help limit secretions and help with weaning.