Caretaking 102 - The Aftermath

Good idea. Thanks.

I'm also wondering if the nursing staff did a 'pinch' test for hydration (you see how quickly the skin falls back to normal plumpness), and tried to stimulate the sipping/swallow urge with a visual reminder (the bottle). It's something that would be used as a training strategy in rehab, so that the individual won't fall back into old habits.

Problem is, if they picked the wrong mix of electrolytes for an insulin-dependent diabetic it wouldn't be a good thing. Water is best.

Yep, the multidisciplinary case conference is a must!

Joan, have you called the town health dept? I recall you mentioned that you had a sleeping chair on the first floor for Bernie as he couldn't get up to the second floor. I think the town could offer you a hospital bed or other hospital equipment on a loner basis. I know it did at one time. Also, the dept. should be able to advise you what nursing care arrangements are available for in home care.

I am no medical expert, but from what you have observed thus far, getting Bernie back home might be better for both you and him. It seems a bit scary to me that the treatment plan required by a patient such as your husband seems to be missing. Perhaps this facility isn't geared for the acute care he needs

My DIL's uncle was just placed in an full care assisted living facility in Conn. After a stint in rehab. He has multiple issues, PD, cerebral palsy, he is a diabetic, as well. The point of all this is to say the family hasto provide round the clock private nurses for him at $20 an hour. If you keep Bernie where he is now, perhaps hiring private nurses is the right way to go.

We have a day bed on the first floor. Bernie just prefers the chair. He falls asleep in it most nights while watching TV. A physical therapist who came to the home to evaluate him between hospital stays mentioned trying to get Medicare to rent a hospital bed for him if it were needed. Much will likely depend on his condition when he comes home.

The mysterious "bottle" was a can of glucerna (sp?)! The problem wasn't with the contents of the can but with the timing of feeding it too him just before breakfast, which caused his blood sugar to soar due to the extra 220 calories. We need to find a better time for him to take the supplement. Perhaps mid-morning or mid-afternoon.

Joan, since he is insulin dependent, it could be his mid-morning or mid-afternoon snack, you are totally right about that, maybe you could even devide it to 120 cals. for mid- morning and mid- afternoon, of course making the total supplement 220

I ended up having a six hour long visit with Bernie today since I decided to wait for my son to come for a visit and then go home with him.

I requested a meeting with the head of the kitchen staff who arrived just as Bernie's lunch tray did. The head of the kitchen staff immediately spotted three problems with the contents of Bernie's lunch tray - high sugar desert, gravy poured over the turkey and mashed potatoes, and vegetables that were too starchy for a diabetic. He came back in moments with more acceptable substitutions and then we spoke for awhile and made a plan. Dinner was a vast improvement. I requested an appointment with the dietitian tomorrow to work out any final details. Now Bernie just has to understand that it is ok for him to call the kitchen if there are further dietary issues.

He had two intensive therapy sessions today - occupational therapy in the morning and physical therapy in the afternoon. Unlike yesterday, he was seated in his chair by 9:00 am this morning as opposed to noon yesterday. This was all very encouraging.

I had time to meet with the social worker. She estimates that Bernie will be in rehab for about two weeks. This could change depending on the progress he makes while he is there. Aim is to build his strength and self reliance. She will arrange for Home Health Care support as part of his discharge plan.

I spoke with the nurse who covers his room and as requested brought in a copy of his current medications. Bernie went over the list with me and we made modifications as needed based on more recent events. This will enable the staff to give him the medication he should be taking at the time he should be taking it.

On the whole, this was a very productive day.

Good progress. And, demonstrates how being diligent and proactive should get appropriate care.

Ask to speak to the registered dietician on staff to make sure that (s)he is aware that your husband is a diabetic. For some reason, it may have not have been noted on his chart. My sister has been a dietician at a hospital and a nursing home and she is the one that works with the doctors to determine an appropriate meal plan and communicates it to the kitchen.

This was the original issue. The kitchen staff knew he was diabetic but needed to be instructed on the difference between diet controlled and insulin dependent. The dietitian was not on duty when my husband was admitted and will be on duty again for the first time tomorrow. Social Worker and nurse have both left messages that I would like to meet with the dietitian ASAP and I left a message to that effect on the dietitian's voice mail earlier today.

Wow! Thank God you are there to advocate for him. Just be sure to take care of yourself as much as possible, as well

I am proud of you, Joan. You took care of the situation brilliantly. You are not one to make waves, but when the need arises, you take care of issues like a tiger.

Thank you for the words of encouragement. Advocacy remains a work in progress. At least the staff knows that Bernie has a caring family member who will follow up as needed if/when problems arise.

I am trying to establish some sort of schedule for myself and work on developing/keeping a healthier mind set for me during all of this. Mornings are for housework, local errands (I need the walk time), and working the phone (canceling doctor's appointments, following up with South Mountain, answering phone calls from family and friends). Early afternoon is for visiting Bernie, assessing his condition, and doing any in-person trouble shooting that may be needed. Evening is for returning those phone calls that can be returned at that hour, sending and responding to e-mails, keeping on top of hard copy correspondence, and general decompression. For those of you who have not been so unfortunate as to have a close friend/relation in hospital/rehab, please realize that this is as much of a job as working full time. Keeping on top of these things is good in that it it gives one a better sense of remaining in some form of control over the situation.

You are right, advocating for a loved one in a medical setting is a full-time job, and on weekends it can become 24/7 because somehow they think the sick people are just fine without proper care over weekends. It never fails to astonish me how lapse things can be in a nursing home or hospital on Saturday and Sunday. Why is that? It's not as if they can't schedule people and make information available.

Anyway, congratulations on doing a fantastic job, Joan. And I think it's excellent that you are organizing your efforts and maintaining a structure for this ongoing campaign. I hope in a couple of weeks you and Bernie will be at home, stronger and much more relaxed.

This was a good morning. When I called Bernie this morning, he was in good spirits - no complaints, nothing needed from home. I was able to relax for the first time in weeks without feeling guilty that he needed me there, that minute to handle some real or perceived crisis. Things are definitely on the upswing for now. Much of that would not have been possible without the incredible support I have received from this community. I don't know how to begin to thank all of you for what you have done in offering an ear, a gem of advice based on your own life experience, rides to and from the facilities he has been in, etc. We are all truly blessed to live in such a caring, helping community.

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Bernie was tired when I saw him this afternoon. He did not sleep well because the Rehab staff had him sleeping in padded booties which he complained irritated his feet rather than cushioning them. He did find someone to help him put cream he brought from home on his feet to ease the irritation so that is a plus. I told him he could refuse to wear the booties or just take them off himself if they are too uncomfortable. We shall see what happens. In addition, he had just completed both a physical therapy and an occupational therapy session before I came and that tired him out.

Bernie and I met with the dietitian and explained the problem we were having in keeping Bernie on a therapeutic diet needed to meet his medical needs. She agreed to work with the kitchen to improve matters and urged Bernie to call the kitchen if substitutions were needed for items on his tray. Hopefully, Bernie will follow through. Lunch tray today was an improvement. Relatively dry meat, rice, green vegetable that was not too starchy. Fruit packed in water rather than cake for desert. He ate with no complaints and said he was full. When I left, he was going through the week's food offerings to indicate what he should eat for each meal. Hopefully, he is beginning to sense that self-advocating is not just ok but needed.

Bernie and I will be meeting with the social worker on Wednesday at noon to develop a treatment plan for him. Friend who is driving me on Wednesday has agreed to pick me up at 11:45 so I will be there on time. Afternoon pick up should not be affected.

Thursday plans will have to be changed. The rehab made a follow-up doctor's appointment with his urologist for 10 am on Thursday. The doctor's office is in West Orange. This will necessitate picking Bernie up with me at about 9:00 am, driving him to the doctor's office for a 10 am appointment in West Orange and then driving him back when the appointment is over. He is cleared to ride in a car but there will need to be truck space for a folding wheel chair. If anyone can help, please let me know.

There is now an activity on the 'Lotsa Helping Hands' Calendar for Thursday, October 8th for the needed transportation to the doctor appointment, so you can sign up there if you are able to volunteer to help. We didn't split it up, but that might be a possibility.

Repeating the link to the site here for anyone who is interested in signing up and had not done so previously: https://www.lotsahelpinghands.com/c/733900/

MOL DNS server appears to be down. Therefore, I can't access the PM someone sent me yesterday. If it relates to this blog and is time sensitive, please try to reach me through some other means. A direct post to this thread, phone call, e-mail, or message on facebook will all work. TIA.

What a morning. Couldn't reach Bernie. He was likely otherwise engaged. MOL went down and I couldn't retrieve a message, which turned out to be unrelated to what I have been going through, cat deposited a huge turd outside litter box (which I stepped in requiring cleaning of shoes) in protest for lack of company/attention she has been receiving lately. Time for slow, cleansing breathes.

Oh, boy. If it was me, it would be time to sit down on the deck with a cup of tea in the sunshine for a few minutes. Deep, slow breaths is right.

Can you call a nurse's station to make sure Bernie was just busy with something like a shower or PT/OT?

Tried calling again. Phone is temporarily out of order. I'll follow up when I get there around noon.

On a positive note, I called a friend who will be able to handle the doctor's office visit on Thursday. So that is covered.

Sheesh. Plenty of technological woes, huh? Glad things are getting back on track otherwise.

Today's visit was important but no as relaxed as I could have hoped. Bernie is showing the same signs of dehydration at the rehab facility that he showed at home. He simply is not drinking enough to support his kidney health and I don't know what the rehab staff is capable of ding to correct/reverse that.

When I arrived in his room this afternoon, he was sitting in the wheel chair with a full diaper and didn't even realize that the diaper was full of his dung. I was able to get the diaper changed for him but he needs to be able to notice when the diaper is full and care enough to ask for help in changing it. He was also hiccuping, claimed he had been doing that all morning. When I finally got him to drink a glass of water, the hiccuping subsided.

The food on his tray did not match what was on the slip that came with the food. Bernie wanted to eat it anyway so I let him. We need to add low potassium to the list of diet constraints, at least until he becomes hydrated again. Otherwise, it will be back to the hospital and none of us wants that.

Difficult as it was to manage him at home, I think I was doing a better job of it than the rehab staff. Tomorrow is the meeting with the social worker and team to plan for getting him better. I will have a lot of ammunition to present at that meeting! Wish me luck and strength.

Tomorrow you need to focus on what Bernie needs to get well. Forget about stepping on anyone's toes. You are a very gentle person, that is your nature, so just say what you need to say to get him well. If you don't, if you get distracted, you may regret it later. This is your best shot at addressing the issues.

Take notes. Prepare a speech that contains everything that you have to say, so you don't forget anything, and then let them ask questions. When you leave there should not be any questions about what needs to be done, ask every person in the meeting what their take-away is.

Ask you son to go with you. He might not be able to do it, but at least he was asked to be a part of this important meeting.

It is probably too late now, but in the future of the food he receives does not match the slip take a picture of the tray and the slip. I would worry about you saying they are giving him an inappropriate diet and them referring to the slip and claiming they are not

Hang in there, Joan. It's so frustrating that the staff at the nursing home can't seem to get it together and give him what he is supposed to have. Also, they ought to be able to see when he gets dehydrated. It's a nursing home, not a hotel or restaurant. You guys should not have to be doing ALL the advocating!

As Copihue noted, put together a list of issues you need to bring up so nothing gets lost in the shuffle at the meeting. And write down all the answers they give you. If you aren't satisfied, follow up.

I'm so sorry this is so difficult. And I really, really hope they start doing a better job, starting immediately.

I just spoke to him on the phone and now he asking for water. I called the nursing station and asked them to bring some to his room.

I have a notebook that I bring with me when I go to see him each day. It contains names, phone numbers, and issues to be raised each day when I get there. The same approach should work with tomorrow's meeting. The friend driving me to see him tomorrow is an MD. I may discuss some of my concerns with her on the way over. I also just sent an e-mail to my daughter-in-law the RN asking for any input she might have. Any further suggestions would be welcomed.

I wonder what happens with patients whose families do not advocate for them.

Joan, rehab after the experiences Bernie has been through is usually about more than just post-op exercising to rebuild physical strength. It's meant to also re-establish life skills in the new context of living with the various aids a person needs to use, and living without the various body parts the person took for granted. It doesn't sound as if Bernie is getting that grounding into life with his new aids/without various bits, but instead is being left to figure it out for himself.

At your case conference, do you feel comfortable requesting Life Skills retraining throughout the day to support his personal care and hydration needs etc? Or a Buddy from a support group to spend time explaining how he manages these details? I know the support groups have volunteers of all ages who have gone through the adjustment period, happy to meet newbies and help them over the awkwardness. It's probably easier if a bloke nearer to Bernie's age explained some of this very personal stuff to him.