Ltac really that bad?

[SCI-Nurse]

The therapy will help a lot. The VA SCI centers are very flexible. There should be shower days-those are the ones he should not refuse! But Showers/baths should make him feel better and best time to assess the skin also. CWO

[Scidaughter2]

Wondering… does the C-diff cause a lot of sleepiness? My Dad has been dozing a lot pretty heavily

[SCI-Nurse]

Any infection in a person, especially elderly usually causes sleepiness. Make sure he is not dehydrated. CWO

[Scidaughter2]

It's been a while since I updated. Dad looks superb at the VA, he is clean shaven and was up on his chair a lot this week, despite still being in room isolation due to c-diff. He is awake during the day and alert. He is able to lift his hand onto the powerchair joystick and control it using his hand. It was all very promising to see. What's been even better is the care he is getting, top-notch spinal cord injury care--it's such a relief for us.
One thing that is becoming more apparent though, is his memory issues that seem to come and go. I noticed that the more he is up and out of bed the more he is able to stay oriented and focused. I sat in on a memory assessment and he answered maybe half of the questions correctly. For a few days in a row, he was getting better about remembering time and place, details about his recent history. He was most like himself since before he was injured. When I left him that morning he was very "with it." Then yesterday afternoon, he barely said a few words to friends who came from hours away to visit. He couldn't recall what city he was in or who had visited earlier that day. He was totally confused, a complete 360 from hours before. Today he seems okay again.
They are thinking this is related to his injury and current infection. Someone mentioned brain damage from lack of oxygen. He's also 74 years old. How much is permanent brain damage and how much will he get back? I do miss my Dad and he seems to be such a stripped back version of his former self.

[SCI-Nurse]

The many variables you mentioned could affect mental status and these could come and go. He sounds like he is being monitored closely.
I hope he continues to make progress

SCI-Nursepbr

[Bonnette]

Hi Scidaughter2. I've been following this thread - without piping up - because I have no expertise in the dilemmas you're facing, and have not wanted to wade in with nothing but my best wishes for you and your father (which I certainly have). On this subject of care- and infection-related dementia, I do have experience and can tell you that hospitalization for serious issues - even without the complications and delays your family has encountered - is more than enough to cause exacerbations of seeming dementia, with contradictory examination results and intermittent periods of improvement/deterioration. Reliable assessment of dementia will have to wait until your father's condition and surroundings have more or less stabilized. The situation is too fluid at the moment for dementia to be much more than a working diagnosis and point of reference.

So many things contribute to the picture: overwhelming levels of stress (physical and psychological); fear; guilt about being the focus of loved ones' anxieties; sepsis; skewed blood chemistry; lack of stimulation; diminished sensorium; meds; vitamin B12 deficiency; off-kilter thyroid function, and so many more factors come into play. A full neurologcal evaluation in the future, once acute situations have been managed, will be diagnostic. For now, gentleness and understanding, kindness and a loving presence - all of which you have so beautifully shown your father - are first-line approaches that will support and ease his clinical care.

[Scidaughter2]

Thank you so much, Bonnette. This is very helpful in explaining what I am seeing and keeping me hopeful since it's too early to call it permanent or not. My Dad really responds well to people who are calm and empathetic, I've noticed. If you are in a rush or distressed, it really stresses my Dad out too. I see that patience really is the best medicine here.

[SCI-Nurse]

In elderly people, infections, respiratory problems, etc. can cause delirium, which is not the same a dementia. Once his infections clear up, request a neuropsych evaluation to determine if these changes are permanent or temporary and also how to deal with them.

(KLD)

[Scidaughter2]

The good news is his c-diff treatment is over…He just needs to go 48 hours without a bowel accident in order to leave his room. The longest he has gone is 24 hours. We are hopeful and then PT comes to get him up for the day and he has another accident. Clock is started again. I understand that bowel care is very important but it’s hard waiting as there is a very nice gym and a whole facility for him to explore just waiting for him. Being confined to his room isn’t helping his cognitive problems either. Dietitian is working closely with him to firm up stool and he is getting better at eating solid food. But it’s very frustrating having to wait for his bowels to shape up.

[SCI-Nurse]

As long as his c. diff tox test is negative, he can be on meds like Imodium to firm up his stool, and finally get onto a bowel program that works. (KLD)

[Scidaughter2]

Thanks KLD. I asked if he could be retested for cdiff in order to clear him from isolation and give Imodium. Nurse said they wouldn’t give Imodium if he has cdiff. Since yesterday they have him on an appetite stimulant and Metamucil. I am not hopeful that that will be the magic bullet that works right away and asked if he can leave the room and work concurrently on his rehab and getting bowels in shape instead of having bowels in shape first before he can move on to full rehab. Really want him to leave his room, it will help so much with his mood and appetite. They won’t even put in chair now because of accidents. He had 5 small ones yesterday, all loose.

[SCI-Nurse]

Yes, he should not be placed on Imodium if he is still c. diff. positive. In my experience Metamucil is NOT a good med to use to firm up stool, especially if the patient is still testing positive for c. diff.

Hospitals are rife with drug resistant c. diff., so if he still tests positive after having completed a course of antibiotics designed for c. diff., I would recommend requesting an infectious disease physician specialist and look at other possible treatments. The newer drugs and treatments are expensive, so the are often reluctant to go that route. (KLD)

[Scidaughter2]

It’s been a few weeks since I last updated. Dad has been out of isolation for two days now, he got to use the gym for the first time and socialize with the other veterans. Family reports he has good and bad days and even within that, good and bad parts of each day. Sometimes he is lucid, other times confused. He loves his pt and ot and will do what they ask, but isn’t as responsive to nurses. Sometimes refuses to get out of bed. He thinks he can just eat later “when he’s ready” so often times food just sits there uneaten until a nurse feeds him. He really doesn’t like being fed. I’m really hoping ot can help him with this skill, if he can feed himself he will get stronger because he will start eating again. They are really working his hands so he can control his chair better. I’m hoping now that he’s really beginning his rehab, three and a half months after this injury, he will show improvement but we are preparing ourselves too for the opposite. My brother and I are discussing who can care for him best if he comes home. The VA has some amazing resources for in home care we are learning. Even with that, however, I will be moving my family across country and settling my kids when Dad is due to be discharged and won’t be able to take him immediately. My brother cannot take him at all. My stepmom is elderly and is undergoing cancer treatment hundreds of miles away. We are starting to research nursing homes nearby for the period right after dad is discharged. I know that is not the preference for most people here but I’m at a loss of what to do when family is not willing or able to take him in given his status as an elderly quad with cognitive/memory issues.

[Scidaughter2]

Update and a question. My dad is due to be discharged from rehab in a few weeks and we are looking into nursing homes for him. Unfortunately he has been diagnosed with vascular dementia, which the doctor thinks was present before his injury. Now that I look back there were small signs that he was losing his memory from this past year. He has good days and bad, but when he’s lucid he still doesn’t understand the extent of his paralysis and thinks he can just walk out the door. It’s very sad. He is generally content though and when I explain that he’s paralyzed he just nods and doesn’t react. He seems to just live in the moment. I’m working on getting his service connection with the VA up but need durable power of attorney which I don’t think he has previously arranged. I talk to him about it and he insists it’s on his fridge at home but no one can locate it. Because of his dementia he might be confused about this. Anyway, what’s the best way to obtain POA? Do I have to hire a lawyer? He cannot sign or use his hands. Because he has dementia will it be valid?

[SCI-Nurse]

Probably not. I would recommend seeing a lawyer who specialized in estate/family law. Have you talked to his PVA NSO? (KLD)

[Scidaughter2]

KLD, his PVA rep said they cannot access his case file until access is granted, from my brother or I via POA. I don't know why they just can't go to him and have him grant access verbally. He's clear headed lately and would understand their intent.

[SCI-Nurse]

If his physician deems him competent, he can sign a POA by making a mark and having it notorized. This can even be by holding a pen in his mouth. (KLD)

[Scidaughter2]

Thanks, all. We are finalizing his estate, AD and POA now. He really doesn't like it when I ask him to sign with his mouth, he kept telling me to put the document on the table and he will sign it with his hand. Obv. this is not possible, but I do let him try then I gently assist him and suggest other ways once enough time has passed. It's a process ya'll.

The VA has kept him in their sustaining care rehab unit, where he receives PT 3x a week and they are taking good care of him. However, I am feeling the pressure to find a nursing home for him. They have sent out dozens of referrals, only one place has accepted him and this place wasn't on the family's list. I went to visit and didn't find it suitable. I have identified 5 places that I would gladly send him, they have all denied him based on need, even though I will hire additional an caregiver to bridge the gap. He is c3 incomplete, has been though the acute rehab program at the VA but his main medical issue is his memory and cognitive decline. If it wasn’t for that he would have made it a lot further in rehab.

This is all so overwhelming for my brother and I. We just want a decent place for my Dad that is close by so we can visit and oversee his care. My Dad worked his whole life to ensure this would be financially possible so we are grateful for that. However, these homes just see his complex needs.

IF anyone is in the Atlanta area and has any good ideas for placement or where we can find good caregivers to visit him in a nursing home when I can’t, please let me know. I was thinking about asking my daughter’s sitter if she wanted to but ideally this person should have nursing experience. However we also need someone to keep him company and remind him to drink water and feed him in the specific way he likes. I just moved to the area so don’t have any social resources.

I will not be able to bring him to my home, for a lot of reasons, but one of them being the mental health of my kids and myself. It can be distressing seeing my Dad in his current state and they visit when I know he’s up in his chair and able to converse without scaring them. They are very young and don’t understand, although they are accepting. I also work FT. I want our interactions to remain calm and sweet. My brother lives 3.5 hours away and will visit on occasion. My stepmother moved to another state to be cared for my her family as she has advanced cancer.

[Scidaughter2]

Some encouraging news--I zeroed in on a private care home that would be great for my dad to live in, hoping they will have a vacancy soon. I am wondering if I should get started on ordering a mattress for him? The VA will only provide bathroom equipment and wheelchair but not a mattress. I want to prevent skin breakdown as much as possible, even though I am confident this place would turn him as needed. Would the mattress be something that could be placed on top of a normal bedframe? Do I need a hospital bed? I don't think the home would provide one.
KLD-what are your thoughts about colostomies? My dad has neurogenic bowels and the digital stim they do at night doesn't always empty him effectively. He recently had a distended abdomen and they ruled out blockages. Drs seem to think this might be a good option for managing his bowel care. He has a rather large hemorrhoid too and he hates the bowel program. They are prepping him this week for a colonoscopy and we will go from there to see if he would make a good candidate for a colostomy. My main hesitation is the fact that dad would be going under anethesia and I fear this might worsen his memory issues.

[SCI-Nurse]

Our VA SCI unit provided both hospital bed frames and appropriate mattresses for our discharged Veterans, both SC and non-SC. Talk to you PVA NSO if you are getting push back on this.
A colostomy, if it can be done laparoscopicly might be best for untrained staff at this home. The laparoscopic procedure cannot be done for all, especially those who have had previous abdominal surgery. They would not do the hemorrhoid procedure at the same time usually; see if that can be done before he leaves the VA though. (KLD)