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  • Scidaughter2
    replied
    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.

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  • SCI-Nurse
    commented on 's reply
    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
    replied
    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.

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  • SCI-Nurse
    commented on 's reply
    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
    replied
    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.

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  • SCI-Nurse
    replied
    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)

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  • Scidaughter2
    replied
    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.

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  • Bonnette
    replied
    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.

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  • SCI-Nurse
    replied
    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

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  • Scidaughter2
    replied
    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.

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  • SCI-Nurse
    replied
    Any infection in a person, especially elderly usually causes sleepiness. Make sure he is not dehydrated. CWO

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  • Scidaughter2
    replied
    Wondering… does the C-diff cause a lot of sleepiness? My Dad has been dozing a lot pretty heavily

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  • SCI-Nurse
    replied
    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

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  • Scidaughter2
    replied
    Dad has had a busy week, getting settled into the VA and being assessed daily by the team there. We meet with everyone tomorrow to discuss treatment plan and we will also get a discharge date (gulp). So far, the VA has been everything we wanted for Dad in the first place, people knowledgable about SCI who recognize his unique needs. My brother has been able to visit a lot and 2 days ago they started training him on the powerchair, after 3 months in bed he was able to roll around. He could control it using his right hand. Yesterday he was very tired and refused a bath and shave (very unlike him) and he also tested positive for c-diff (a mild case according to the PA) so they put him on different antibiotics for 10 days.
    We are hopeful he can go far in his recovery at the VA, although his energy levels are still fairly low and sometimes he gets confused as to where he is (what city) but can answer questions about his partner, kids etc. For example, my brother asked him what city he was in and he answered "Sarasota" even though we are in Augusta. I think all the moving around has taken a toll on his sense of place and time. Plus, he has been battling infections (UTI 10 days ago and now c-diff).
    Overall, it continues to be a roller coaster, but if looking at the big picture I'd say we have come a long way since those days in the ICU. We are getting a clearer picture of his function, since he is ASIA C I can see him making more functional gains, but muscle weakness and low energy seem to be the biggest factors.

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  • SCI-Nurse
    commented on 's reply
    Happy for you and your dad. I hope he gets the care he needs at Augusta and can start a formal acute rehab program soon. (KLD)
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