Should I decide to learn how to be a caregiver by taking hospital education courses?
He is a widower with 2 children 23 and 28. The 23yr old son is a College student who was going to take test and apply to Medical School. 28 yr old daughter has anxiety and a 3yr old. Today at the hospital the Social Worker presented my Nephew with the 24 hour Care Plan to be filled out and implemented upon BILs discharge. The Transplant will take place 2hrs from our homes. Following surgery BIL has to remain within 60 miles of hospital along with 3 full time Caregivers. Son will be first Caregiver. That is where the list ends. I so want to help these kids out. But being stuck in an apartment for at least 30 days helping care for someone having had this surgery, I can't seem to wrap my head around it. Should I decide to do this there are in hospital education courses. But I would like to hear some personal experiences before I commit myself.
I could never say the words out loud now to family. There would be major waterworks from all including myself. Someday when time has passed I'm sure there will be a big toast to BIL with frosty beverages. I will throw in my thoughts from what I wrote above. Thanks for the idea!
I read a lot on this site and and occasionally chime in. But mostly just passing by myself. Lots of knowledge and help on this site but I enjoy the fun stuff most of all.
What you wrote was an amazing eulogy to Bil's life.
" BIL was so full of life and everyone in 3 counties best buddy. He and his son traveled the world after his wife passed. BIL could not have crammed 1 more hour of fun into his 52 years. It's almost as if he knew on some level he would not be with us into our old age."
I sincerely hope you get to share your kind words with your family members.
Just a stranger here, passing by, amazed by your Bil's story and your dedication.
Sorry for your loss.
Looks like the family were right nearby or coming soon.
May their presence console you.
{{{{Hugs}}}} to you and your family Lizzywho.
Well, this is totally normal on all parts. Sorry to say that, but this "pre transplant-I'm super sick and may die" attitude is REALLY hard to deal with. Your BIL is getting the best care possible, I'm sure. I wouldn't even be surprised to find that my SIL has seen him, he's doing transplant rounds now--(he is going to be a Hepatologist specializing in Liver transplants)...small world.
The whole family needs to be on the same page. Period. The SW is just doing her job (ours was a joke, I asked her for help so many times and she'd push these pamphlets across her desk--she NEVER walked down the hall to even MEET my hubby!)
There likely will be more of these "days", before, or if, your BIL makes it to the actual transplant.
As I have said (and not to appear a saint, which I MOST assuredly am NOT!!) I was the only person on board with hubby's post op care. I had to address the depression he had (and still has, times 10, now)...I had to drive to every single apt and take notes. I had to deal with the ins. co. by myself with hubby second guessing me all the way. I shopped, fed, cleaned, babysat....and hubby wondered why I "tanked" when he was "better".
Maybe there are a few too many of you running to him? I don't know. Hubby would state he wanted visitors, but he slept through most visits and he is almost 100% amnesiac about the 2+ weeks he was in the hospital.
Hang in there, you are SUPPORT, not his primary caregiver.
DEEP BREATH. Many things are out of your control. And good luck. My heart aches for everyone involved in this. NOTHING can prepare you for the emotional rollercoaster you're on. Just try to pamper yourself just a little and set boundaries....and know that somebody out in cyberspace really "gets" what you're going through.
LVAD is left ventricle assist device.
I was not there but after hearing their stories my conclusion was "yesterday" BIL is not on board in any form or fashion. He is on a roller coaster. We will see what today brings. Judging from yesterday, it appears to me BIL declineing treatment and wants to be left alone to die. That was Niece's take on the situation last night. If that is his decision, that's his decision. He has a Nurse Call button he refuses to use. He better get used to using it.
Tough Love: I can do it but it will bear more weight if it comes from from his brother, my husband. That was my reason demanding a command performance by him. He's definitely a tough love kinda guy. The plan is to see what today brings.
I have dealt with ICU Psychosis with my Dad as explained to me by the RN on duty. Dad wasn't in ICU but she said it applied. BIL is not in ICU either. I have wondered if it might apply in this situation.
The text msgs have started coming in as I started typing so I better sign off.
The only good thing about yesterday. BIL only had one functioning vocal cord. I know, I am terrible but I couldn't resist.
Good for you establishing your boundaries. A screaming child is very hard to comfort. This is hard on her too, she needs support from someone she has a trusting and loving relationship with. When they are so young, unfortunately many times only a parent will fill that role.
BIL needs to understand that his children are young and they have many responsibilities. They have their entire lives before them and he by not being cooperative is making this much more difficult for EVERYONE in the family. Their hands are tied until he changes his outlook. There is nothing anyone can do.
No real advice here but only understanding that some situations are impossible. That he is competent makes it even more difficult. All we can do is the best we can. Establish boundaries, stick by them. Show some tough love knowing that maybe this will help BIL to face reality which he is not at all acknowledging now.
What a stressful time for you! And you are correct the SW job is to assess whether or not the BIL is psychologically able to handle getting transplanted-not only the procedure itself but the major recovery issues and time. You are a quick learner! While emotions are high, you all seem to be coming together as a family and coping (if only barely, it's a good start!)
This too shall pass. Take your mental health day and relax.
I totally agree. And yes, I may have done the Caregiver white lie. I don't know if BIL being uncooperative will get deemed uncooperative candidate but it's sure not gonna help being there is a pysological assessment in progress. Yes, they may not be thinking clearly as to the recovery and everything else you mentioned above. I think it's pretty common for men to experience depression after by-pass surgery. I had not even had time to consider BIL was a prime candidate for depression. I am sure both BIL and Nephew haven't either. Their immediate concern I am sure is BIL dying. Guessing they are thinking recovery can't be any worse than where I am right now. Leave me alone! Depending on where Nephew was in pre med studies apparently they haven't gotten to the mind body connection or post surgical depression. Even if he's made it that far he probably hasn't had time to remember either. I will try to get him on the phone today and try to convince him he needs to get on board and pro active with this.
Thanks for posting and jogging my memory .
In my mom's situation, family finally got her to agree to eschew mastectomy at a local hospital ( you'll be home in two days!) for Sloan Kettering, where they kepy her for two weeks and insisted on daily therapy sessions. The mind and the body must heal together, or you're in a pretty pickle.
In my husband's case, part of the post surg protocol was antidepressant medication. The team at the hospital explained to me that after many, many years of seeing post open heart surg depression, they simply decided to head it off at the pass. 12 years later, my husband is on an additional antidepressant as well. I think they've made a huge difference in hus recovery and his outlook.
GCM did not agree with what twisteds wanted for mom and used it against her. One twisted is a therapist with no experience with working with elderly with dementia, course she knew best. The court agreed with GCM and try as they might twisteds lost and care from me lasted another year and a half. Twisteds were shut down, but they kept trying to the point I just could not take their attacks and harassment any longer. At that point they wanted me to stay another six months so they could have their vacations without having to worry about mom. Nope I was DONE!
My point in all of this is that it is the job of the social worker to try to get people to recognize and understand the harsh realities of the care that is needed when there are medical problems with our loved ones. Many times the one that is the most difficult to convince is the one that is sick. They have been independent adults for many years and illness that requires assistance is very difficult to accept, thus the recommendation for psych therapy. It can help them accept the reality. All the more reason to discount the suggestion, they do not want to know. Denial becomes a way of life.
Good luck. This has to be very difficult for all involved, and hopefully will get easier down the road.
I confess...my name is lizzy but I was born in 61. But it's still a small world. You did not offend me Houston is a bear. I would not want to live there. My Dad saw a Dr at Baylor Clinic and was a frequent visitor to the VA Hospital in San Antonio so even though I am a Rural girl I can do traffic, but I wouldn't want to live where I had to commute in it long term.
I hate to hear your hubby is struggling so and how hard it must be for you to lay it all out here. You do not know how much I appreciate the info. As it turns out I had to talk to Nephew today concerning his and BILs dislike of the Social Worker. We discussed all the reasons they "hate" her. I won't even list them because there are explanations for each reason. Basically she is doing her job. It was to the point they wanted her replaced. They hadn't asked yet but seriously considering it or trying to figure out how to do it. In other words being very resistant to letting her do her job. I told nephew to really think about this and explained her job. There is some type of psychological assessment involved in all this evaluation. This is her job. Don't take it personally. Told him IF they replaced her the next person might read file and stamp BIL as uncooperative candidate. I told him I could address their concerns with her or discuss the personality conflict with her. I told him they need to think about this for a minute. He text back about 2 minutes later. "We will keep her". So, is BIL open to psychological/psychiatric support? No! If he will halfway cooperate I think this Social Worker might be able to sway him. She has bent over backwards to answer any and all questions for me and niece, gather info, resources, etc. I never got around to calling her today to ask about transitioning from hospital to a facility but I have to Monday. Our last phone conversation she mentioned their resistance to letting her "in", letting her help. I will revisit that with her Monday.
What a great story about the Transplant Dr comforting you in the hall. I hope everyone runs across a Dr like that once in their life. Kinda makes it hard for other Drs to measure up though.
When Nephew and I talk again one on one I will talk to him about how important professional emotional support is going to be for BIL when/if this happens. I have high hopes for this young Social Worker. Thanks Again.
Transplant patients ARE very sick people post transplant, often before, too. Hubby's liver was 80% compromised, but he NEVER looked sick, so it was hard to take a "perfectly healthy" man to get a liver transplant---
I know you're anxious, but that does not help. You have SO MUCH SUPPORT!!! all 4 of my daughters were pregnant during the time hubby has his transplant and 84 weeks of chemo to destroy the Hep C (is didn't work,he immediately relapsed--but he did Harvoni 2 years ago and is cured...so the HCV is not an issue anymore.)
My point is: Only I put my life on hold for him. The kids were all told to go about their lives. And they did. Son in law school.. DIL in med school, SIL in med school, 2 daughters in college, life has to go on. And the grandbabies were such a blessing!!
One particular day in the hospital hubby was being just intolerable. (I am just going to blame the high doses of prednisone he was on) He was railing and yelling at ME, and I was there everyday, all day, helping to care for him. I left his room and was crying, walked past one of the transplant team docs. He saw me, and tho he was talking to his residents, he held me fast in his arms while I sobbed. They left and he turned me to face him and said "Your husband is the biggest pain in the A$$ I have ever met. Now, having said that, he is under a tremendous emotional and physical strain. The prednisone is making him angry and anxious. He's not mad at you, he's just mad. Now, count back to the transplant day (about 10 days) and remember this: IN 100 days he will be off all but a couple of antirejection meds. He will able to work some. This is all normal. Go home, don't come back tomorrow and don't answer the phone unless I call you." God bless this doc!!
You should be able to coordinate your BIL's care with so many people on board. Like I said, it was just me, all the time. Instead of drawing us closer together, this experience and the grueling chemo put a brick wall between us we've never bridged. He's angry, depressed, unhappy...and I put this all up to the fact his TP team did NOT get him ANY psych care whatsoever. He's sort of trying to address it now, but I have lost hope.
I imagine the 100 day thing is the same for heart transplant patients, also. Prednisone can turn an angel into a demon. Make sure your beloved BIL gets the emotional support from professionals and family alike. I KNOW my hubby felt abandoned. His own mother called him once (she lives closer to the hospital than we do)...and he was hurt by that. I was glad to have my kids around me, but I still did it all.
Looking back---I would NEVER have taken him right home. I also wouldn't have babied him so much.
I didn't mean to offend by my comments about Houston. I just can't do Houston any more, and I have to go twice more in the next 3 months. They say you get used to it....but I don't know.
Everyone has settled down a bit.
I met the Social Worker yesterday. She is great! Unfortunately Nephew and BIL despise her. They say she is too happy, upbeat and smiles too much, and asks too many questions. Okay, she is very young, and she does seem to have a permanent smile. But she's very helpful and she could have a way worse personality.
Yes I agree and have pounded the point this will be WAY to much for one person. I think they see it.
Oh the Houston weather. I live a couple hours South of Houston. Yes even us native Texans wonder from hour to hour is this a drought day or will it rain 12 inches?
I am so glad you posted with your experience. I am sorry re living it made you cry. I do hope hubby's depression improves.
Still wondering about the changing of my title...I thought it was clear if I signed on as one of the primaries there was required training. Who knows...
Doing this on cell phone. Will read you post on computer later to see if I missed anything.
Again, thanks for your post!
My husband had a liver transplant following a dx of Primary Liver Cancer due to HepC. (2005)
I cannot begin to tell you of the "hell" that came before (the 11 months waiting for a donor liver) and the 5 months afterwards, because....
I was the one and only caregiver. I had 1/2 hr "training" by the pharmacist as to what meds hubby would need, and a couple of VERY unsatisfying sessions with the social worker who was in over her head and did absolutely zero for us.
Mostly, I was completely alone.
Can I say that you are FABULOUSLY LUCKY to actually have so many caregivers on board?????
Your BIL will not be as "needy" as you all think. Depends on his personality type, a LOT. The hospital doesn't release them if they are not stable, their meds are not right or they aren't progressing. So, in the best of scenarios, yes, 3 weeks in the hospital and an undetermined amount of time in some kind of rehab. (Hubby came home--if I had to do it again, he would have gone to a rehab facility).
You are looking at blood draws 3-4 times a week for months, clinic visits, emotional ups and downs that cannot be described. You should get some basic training on taking BP, temps, charting. (I already knew how to do these things). ALL MEDS must be charted when they are given. You are going to be playing "nurse" and it ain't pretty.
Yes, it's good to be prepared, but be aware that waiting for a donor organ is way beyond stressful, Even if your BIL is "top of the list" you still have to have a suitable donor. We were called in 3 times, and waited and waited and then sent home. THAT'S stressful. By the last time--it was his liver and things went forth. 18 hours in surgery. 6 hours in ICU---3 weeks in the hospital, home, then two weeks later, back to the hospital for a massive infecti3 week stay. Then another 3 months home.....with a man who has NO patience, no gratitude.....and on steroids. (watch out for this--rage, but no reason for it. I was not prepared!!!)
And his recovery was considered "typical".
I'm going to add: ALL of you caregivers take care of yourselves!!!!! I personally despise Houston's weather (my SIL is finishing his residency at Baylor and I can't WAIT to never have to see Houston again).....but there are a lot of indoor places to go and relax and rejuvenate. Taking care of yourselves will ensure that nobody gets overtaxed and worn out. I was amazed at the neediness of my hubby. He has complete amnesia about the whole thing (thank goodness) and remembers only bits and pieces. I however, remember it all.
After this is over, you all need to get your halos. Caring for someone in this situation---I haven't really got words.
Darn, now I am crying, remembering all this. How differently I would have had things go if I had had ANY pre-warning.
Oh, and EVERYBODY, esp the patient, should be see a psych doc and then be seeing a therapist. Hubby skipped this step and now, 12 years later, has massive depression--which he had since the TP and is just now addressing......I could write a book.
You truly have my prayers and best wishes. (Sorry for the long post--your story just resonated with me.)
I think BIL would prefer his son resume school as if none of this was going on. BIL trusts Nephew 110 percent regarding his health,
decisions, etc. Talked to Nephew yesterday about MCAT test in April. He said there's no way he can test. The situation for the last 6 weeks has caused him to fall behind studying and there's no way he can catch up.
I know I mentioned a LOT of people above. They will not all be hands on. Only niece and nephew of which one will be there at all times. Myself and another BIL as needed. Insurance will cover a visiting Nurse trained in transplant 2-3 times a week for an hour. Other family members have offered support if needed.
There are pretty strict guidelines that have to be met regarding aftercare. I have not seen cardiac rehab in writing anywhere and it hasn't been mentioned. I would think at some point it would be a must. I will put that question on my list.
Not sure if BIL would last 3-4 months outside hospital.
Learned yesterday BIL is not open to LVAD. Not interested at this time.
He still has to be deemed a good candidate for heart or device. It seems a lot of decisions and plans are having to be put in place and committed to prematurely. Is being able to pull together a plan quickly and commit part of being a candidate? Maybe.
There must be other options! The POA needs to be taken care of. Does he need care while waiting for a heart? What if it is six months or a year? Simplify the plan. Arrange for rehab after surgery, there must be other options while waiting.
Son has to finish his plan for med school now. The could end up being a years long process. Wouldn't dad want son to continue his plans?
Niece and I made the trip to Houston this morning to visit. We also had some documents that needed BILs signature that couldn't wait until next week.
Niece, Nephew, and myself had lunch in cafeteria. We talked about a lot of things. Nephew was a little confused about Medical Power of Attorney, POA and DPOA. So we had a short class. Nephew said Medical Power of Attoney was in room but had not been signed. Niece told me on the way BIL told her he had a will. She hopes it's in his safe.
Social did call me back yesterday. She did answer all my questions. She said if BIL was approved forLVAD the procedure would be done a couple days after approval. If approved for heart it would be 3-4 months.
BIL is not in Transplant Unit at this time. He's in one of Hospital Towers on Heart Failure Floor.
BIL has 5 siblings. My husband is one of them. He is not a caregiver. The oldest sister's husband is in his 5th or 6th year battling ALS. She has her hands full. But one of her daughters that lives in Houston volunteered to help niece out with her child a couple of weeks ago. There is one more sister...shes that family member. She is an Occupational Therapist in Houston. She would probably help if asked but no one in the family can stand to be in the same room with her, especially BIL. But if worse comes to worse she would be excellent help if she could keep her mouth shut.
Someone asked yesterday why I was in the middle of this. He's not even a blood relative. That is true. Hubby and I married very young and have been married 36 years. I consider my BIL a sibling. I am more close with my husbands siblings than my own sister.
I was in the room with BIL 10 yrs or so ago when Drs told him he had Congestive Heart Failure and how bad it was. His wife was in the hall having a proper nervous breakdown.
BIL was Best Man in my Sons wedding. The ties run deep.
So, other than the meeting tomorrow everyone is a little more calm than yesterday. They have their names on the paper and back up planned.
BIL is in JC Walter Jr Transplant Center. It's part of the Methodist system. You are probably more sure of the affiliation than I am! Yes it's in the TXMC. One of the places I did happen to look up last night was TempStay. It looked really nice and safe. Pretty sure landline was one of the requirements.
Just off phone with Niece. She's seriously considering being the 2nd trained caregiver but only if Nephew agrees to paid caregivers assisting them. Oh man, these kids might get this right! If I only have to provide them information and occasional support this might be okay. Hard, but okay. I did tell her about TempStay, shuttles, etc.
No call from Social Worker but she does have 24hrs to contact me.
One of the requirements was to have a hurricane evacuation plan. If the social worker can not assist with a template for that I may have to bend your ear on that Iggi. I think you just might have some experience with that.
I'm thinking you all will be staying in Houston for the aftercare? If so there are lots of apts that do short term (30 day) rental within short range of TMC. I'm not talking places like Home2Suite by Hilton or ExtendStayAmerica but apt that are more corporate housing geared for families having care at TMC or for medical staff who are there for short-term training. With shuttles back & forth to TMC and do stops at nearby grocery stores. Yeah it seem to initially cost more but may be worth it as Htown traffic is a beast & super stressful unless the kids already are used to its daily traffic & the toll-roads. Tempstay.com corporate housing is the bigger one that does this. I think all are corporate housing with handicapped entry and bathrooms, laundry, wifi, land-lines and are gated access (so if it takes you all 15 minutes to get BIL out of the car & into the apt, you don't have to worry about getting robbed….).
Whatever you decide, ask the transplant discharge nurse about "land line" need.
I think they want wherever you are staying to have its own old-school land line telephone so that if EMS need to come, the 911 dispatcher can provide the exact address via the land-line. Cells apparently just can't do this. Could be an life or death issue so the land-line is mucho importante. Comprende?
What I am seeing in the paperwork: Patient discharged 3 weeks after the procedure to their home. Which in this case would be a furnished apartment close to Hospital/Transplant Center. For 30 days Patient can not be left alone. The 24 hour Caregiver sheet requires 2 Caregivers sign, commit, and take training from Transplant Center while Patient is doing 3 week in hospital recovery. The commitment sheet also goes on to suggest more fill in caregivers are suggested to prevent exhaustion, Caregiver Burnout. How well I understand the last sentence. Been there, done that, have 3 Tshirts.
Back to my conversation with the rep. She said, I think, one of the trained caregivers has to be there at all times with the fill in extra caregivers.
It's making more sense. Now, my thoughts are to get as much help possible. Now, my worry is Nephew wants a name on the paper to speed this all thru and try to do it all himself. I really want him to slow down and think this thru. I really hope this turns out well, BIL recovers, know it will be a long process, and all can eventually return to a somewhat normal life. I certainly do not want Nephew, exhausted, burned out, depressed, and unable to get back to his studies and on to Medical School, eventually. I am also experienced enough in this to know I can not control my Nephew, his actions or decisions. I also know family relationships are destroyed in situations like these. I have a lot of info to gather and I have to have a serious conversation with Nephew when I travel to Houston Friday.
Anything I am forgetting?
THI umbrellas St Lukes & Baylor over at TxMC.
My jury duty was cancelled. Defendant didn't show. Mistrial. I will be headed home to make that call to Social Worker now.