breaking my heart

[Maco]

My dad had a massive cva a month ago. He is in pcu. He sleeps 95% of the time.When he is awake is does reconized family because he smiles.He has atrach and peg.He can't talk right now because of the trach...but he has tried to by moving his mouth to form words.The md doesn't want to cap the trach because of his secretions needing to be suctioned. He is total care.He isn't awake enough for rehab and he doesn't follow comands.The case worker suggest a nursing home.It breaks my heart to do this.Im a rn and i work fulltime, im married and have kids.I cant take him home with me because i cant be with him 24hrs a day...but i feel that i should because he is may dad and he took care of me when i needed him.He has no movement on rt side,he can't turn himself and he needs suctioning.I feel that the caseworker is wanting to make him comfort measures..she is a paliative care case worker...my dad had no living will...i don't know what his wishes are.I feel that i should give him every chance until hopefully we can cap his trach to find out his wishes.The md says that it will be a long road and that he doesn't know if he will regain anything back.I just feel that everyone is looking at me negative because i want to give him every chance even though it is breaking my heart to see him like this this.Is it normal for a pt with a massive cva to be so lethargic.He has lt side movement but since he has been in the hospital bed he is so stiff and doesn't move his lt side much..he has arthritis in knee and he grimices when i try to move it.He was getting toradol for pain but the md dc because it cant be taking for more than a few days. I asked for ultram to be given on sch for his arthritis pain.Does anyone know what would be good to give him for arthritis pain that isn't going to sedate him and wont cause liver damage? I though that if i brought him home with me i could have someone come in to my home and care for him some but medicare wont pay for it and i cant afford to pay some.Iv always said id never put him in a nursing home and now I will prob have to and it is killing me.My mom passed away when i was 7yrs old and he has raised me.I love him so much. Does any one have suggestions?

[Maco]

His morphine is prn and he hasnt been getting it.

[Maco]

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.

Please post a support group..ive tried and i couldnt find any.

[steelcityrn, RN]

So very sad, but I have to agree with the others. You have a fulltime job as a wife, mother and nurse. The best thing you can do for your father now, is provide him with the best care you can find near your home. You may need to take a little time off to keep up with so many things going on in your life at this time. You have to take care of yourself, as you are going through alot of stress. Keep the faith, miracles happen daily. With excellent care, he may recover to where you can feel that he has been given a second chance. Don't ever worry about speaking up if you feel he is not being cared for well. If the snf or nursing home is not the right one, have him moved. I have done this in the past with my mom, and even though she passed, I know I made the best choice for her.

[Maco]

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.

He hasn't been getting any morphine, it is prn and the nurses haven't been giving him any. I understand that when he sleeps it is the brains healing and I try not to disturb him when he is alseep...but im just concerned because he is sleeping so much, like i said he is sleepin like 95% of the time.Im not very experienced with cva but i was told when it first happened it was norm to sleep...but has been going on over a month now...is it still norm?

[Zookeeper3]

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.

It's still time to be the daughter, the nurse will come... just be gentle with the staff, I was a crazed family member for a bit, and I know the nurses were drawing straws to take care of my daughter because there was a different nurse each shift. I learned which hill to battle and die on and brought food, bit my tongue a few times and learned that not everything is life threatening. I wish you peace and rest. Take care of yourself so you can be there for your family and dad. PM me when you need to vent.

I look back and for the life of me can't figure out how I survived, you will, but don't end up surviving, hanging on to dear life on a thread. That is not living.

Ps, step out of the room for the hoyer, tell the staff "I trust you, I'll be out here", then visit with dad. Eventually you may be strong enough to see, right now, seeing dad's safety dependent upon strangers, while he's hurting is TOO MUCH! Thank the staff when they are done and then go in. Your job is to distract dad and help mount the fight. Not to worry about the hoyer, he'll see the worry on your face. Step out!!!!!!!

[Zookeeper3]

He hasn't been getting any morphine, it is prn and the nurses haven't been giving him any. I understand that when he sleeps it is the brains healing and I try not to disturb him when he is alseep...but im just concerned because he is sleeping so much, like i said he is sleepin like 95% of the time.Im not very experienced with cva but i was told when it first happened it was norm to sleep...but has been going on over a month now...is it still norm?

My daughter slept 90% of the time the first month.... the brain needs to HEAL. The brain heals during sleep. I also demanded a neurologist to see my daughter that did acupunture. It was NOT covered by insurance, but on the third treatment, the pain was gone (doesn't last forever, need meds as well, not a cure all), but Dr. Serano is trained in western medicine as well. I attribute her recovery to him. We were told a year, 4 months later she is back to work, yes she has deficits, but she's working and you never know what the next year will bring.

He also added B2, magnesium malate for brain activity and bowel function with the large doses of pain meds. Just a suggestion, NOT medical advice against TOS, just what we have done. The acupuncture in continued doses facilitated her recovery. Just an idea, don't know what you are open to or what's available.

I found in rehab, no neurologist was covering my daughter, and demanded it. Make sure dad is covered. I'll get some links to you soon, do you mind me asking what state you're in? We're in NC, if you're here I can help more, if not than keep your privacy or pm me.

[traumaRUs, MSN, APRN]

We can't suggest meds or doseages as that is out of our scope.

However, I will offer that my mother had a massive CVA when I was 26 - she was 66 and had worked up until a week before the CVA. She had always made us promise that she would never ever go to a NH. However, I couldn't take her home: I had a newborn, a 5 y/o and husband was deployed. So...yes she did go to a NH and died there 11 days later.

Do I blame myself now (24 years later)? Nope, not for one second. I made the decision that I had to in my case.

You are making the only decision you can do in this situation. Things to do:

1. Talk with discharge planner - see what NH in your area do CVA rehab and will accept Medicare pts.

2. Visit the NH. Ask to see their latest survey. Ask to talk with residents. Are they all in their rooms or all of them out visiting/watching TV, engaged in activities?

3. Ask to see their rehab. How many PTs do they have on staff? Do they offer Sat rehab?

4. Talk with kitchen staff - ensure that meals look acceptable/appetizing.

5. Can staff deal efficiently with trachs/G-tubes? Are they very comfortable?

I wish you the best - I know this is a heartbreaking decision.

[FLArn]

Request a palliative medicine consult. for bone pain in hospice we often use an adjunct pain med such as Trilisate. Never hurts to ask.

[leslie :-D]

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.

wow...i totally agree with kyrshamarks.

dad's injury is still so recent, and i think it's too soon to anticipate any type of recovery.

your dad suffered an overwhelmingly major insult to his brain, and it's going to take time to even replenish itself.

i do think a neuro consult is the way to go, however.

s/he would answer your questions much more plausibly than anyone else.

(take the time to find a reputable neurologist.)

his pain needs to be managed!

please maco, leaving him alone and not doing even prom, is only going to exacerbate any injuries he has and will make him worse.

so just make sure his pain is managed, and elicit the input of the neurologist as to how s/he would 'careplan' his journey to recovering.

imo, it's waaaaaaaaaaay too soon to even consider palliative care.

You are making the only decision you can do in this situation. Things to do:

1. Talk with discharge planner - see what NH in your area do CVA rehab and will accept Medicare pts.

2. Visit the NH. Ask to see their latest survey. Ask to talk with residents. Are they all in their rooms or all of them out visiting/watching TV, engaged in activities?

3. Ask to see their rehab. How many PTs do they have on staff? Do they offer Sat rehab?

4. Talk with kitchen staff - ensure that meals look acceptable/appetizing.

5. Can staff deal efficiently with trachs/G-tubes? Are they very comfortable?

I wish you the best - I know this is a heartbreaking decision.

here's a very helpful link in considering ltc facilities.

take a look around and familiarize yourself with this website...tons and tons of info.

Medicare.gov - Nursing Home Compare

heartfelt prayers for peace and healing.

leslie

[Maco]

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.

His morphine is only prn and they haven't even been giving it to him. I asked if the md could order toradol sch...and it worked for a while but he couldn't keep getting it because of the damage it could cause. I asked he could order ultram and have it sch...he started getting it yester every 8 hrs i believe but today when i was doing rom he started grimacing....do you know of anything than can be given sch that would be effective?

[mustlovepoodles, RN]

I'm so sorry you're going through all this. I know it's hard. We were faced with putting my MIL in a nursing home last year. She had been living in an ALF for about 8 years when she took a bad fall and broke her hip. From there she went to rehab, but she didn't do well. AFter 90 days about all she could/would do for herself is transfer to a w/c(wth assist), feed herself, and brush her hair. Although she is fully cognizant, she could not take care of her self even minimally. DSIL decided to bring her home to live with her, despite the fact that her home is not accessible. Despite the fact that her DH was not in agreement. DH & I were dead set against SIL taking her mother home. IMO, she didn't have a clue what she was getting into.

We have a profoundly mentally handicapped 15yo. He is a full-care, 24/7 kinda kid. I explained to her about how our lives have been affected by living with this responsibility, how it pervades every decision, every activity, every move we make. Love him to bits, but there is very little respite. Eventually, SIL came to understand that she really was *not* prepared for the drastic changes her life would undergo. Love does not conquer all. We found a very nice SNF about 4 miles from SIL(we live 400 miles away) and everyone is pretty satisfied with the arrangement. SIL still feels bad about it, but really, what could she do? There is no spontaneity when you're caring for a debilitated adult, no matter what the diagnosis. It's work, work, work. All caregiving, all the time.

Please don't feel guilty about this. Everyone has limitations. I don't believe it is humanly possible for someone to take on the full care of another human and do it 24 hrs.day forever. Sometimes the *right* thing is to find the best place possible where our loved one can receive daily care. We are in the process of locating a new residence for our son. Not because we don't love him. On the contrary. BEcause we love him dearly and we recognize that we are just about at the end of our capabilities to care for him. We have mixed feelings about it, but in the long run I know in my heart it's the right thing to do.

(((HUGS to you)))