Caretaking 102 - The Aftermath

Like my blog of seven years ago, this blog is intended primarily for me. It is a place to record feelings and impressions, verbalize frustrations, note important information where I can hopefully find it and most importantly record progress. Mistakes will recorded. So will successes. If anyone reading these words wishes to chime in, please do so keeping in mind that the theme here is caring for someone else who is seriously ill, trying to find ways to make them more comfortable with an aim towards making them feel better and helping them gain independence. Ideas leading towards this end will be most welcome.

Joan, I stepped into similar role recently. The new senior issues category might be a good place to place this thread. Prayers

Bringing home a spouse who has just had a serious operation is like being a single parent bringing home a new born baby for the first time. It becomes necessary to think of simple things: What are his needs?

What should he eat/drink? What can you get him to eat/drink?

Where will he sleep? When and where will you sleep?

What clothes will he wear? What clothes is he willing to wear?

What should you do to keep him safe when you need to step from the room to take care of things for him? Will any of those things actually work?

How will you deal with his inevitable tantrums/crying/yelling? How will you deal with your own inevitable tantrums/crying/yelling?

How will you keep him clean? The last point is the one we are most focused on for now. Ostomy patients have a special problem with this. Since he no longer has a bladder, he excretes into a bag. Like a real bladder, the bag will only hold so much. Unlike a real bladder, there are no cues to tell him when the bag is full. Like a real bladder, if the bag gets too full it leaks. Unlike a real bladder, if the bag gets too full, it can explode.

Keeping him and his surroundings clean is a full-time job and has become the major focus for both of us. So much so that the doctor criticized us for focusing on this rather than how well his incisions were healing, if he was running a fever, if there were problems breathing, if there were pains that were severe enough to require attention, if he was becoming dehydrated, etc. We have been too busy with the little adjustments to focus on the major issues. Thankfully, at least for now, there have been none of these. The patient is doing remarkably well in those respects.

When a patient in his condition is released from the hospital, he is told that he will receive home care while he adjusts to being home again. In his case, this is supposed to include visiting nurse service several times a week and physical therapy. What they do not tell you is that you have to call the home health service to ask why these services are not being provided. In our case we waited until three and a half days after he left the hospital to phone and ask what was happening. When the nurse finally arrived after his doctor's visit, we learned for the first time that we needed to focus on how well his incisions were healing, if he was running a fever, if there were problems breathing, if there were pains that were severe enough to require attention, if he was becoming dehydrated, etc. We also learned for the first that the home health care office is open 24/7/365, that there is always someone there we can talk to over the phone, and that nurses are available on weekends if that is when we need the most help. It would have been so much easier if we had known that in the beginning.

Memo to self: When he tells you he put the slacks on which he accidentally poured urine from the collection bottle in the wash, ask him if he removed his wallet first.

Lesson of the day: Waxed paper placed between sheets of machine washed and dried paper really does help the paper dry without sticking/melting.

Failure of the day: The ink used on machine printed paper purchase receipts will wash off, even in cold water.

mtierney:

Thank you. My prayers to you and your family as well. Since we are near neighbors, we might be able to help each other. Let me know if you want to start some sort of informal support group, just the two of us for now.

I welcome your suggestion to move this thread to the senior section. However, I have chosen to keep it in Blogs for two reasons:

The intended content of this thread is not senior specific. We could be going through exactly the same process regardless of the patient's age.

The rules for Blogs are somewhat different from those in other sections of the message board and better suited for my intentions with this thread.

I sympathize with you, Joan. My mother (then 80 years old) was in a similar situation when my dad was released from hospital with a port just over his collar bone (he had acute leukemia and she needed to inject various drugs directly into it on a daily basis). I went to their home when the hospital-sent nurse showed Mom how to do it - Mom was terrified at first (probably because the instructor kept stressing how, if she did it incorrectly, Dad could die from complications). My dad was the world's best patient - stoic, uncomplaining and with a high pain tolerance - but it was still very difficult. I tried to help as much as possible, but I was still working fulltime and the kids were young, so most of it did fall on my mother's shoulders. Luckily, she had friends who also helped during the day and kept up her spirits.

It was difficult for her, even with support of her family and friends - please let us know if you need any backup, anyone to run an errand or sit with your husband while you take care of things outside the house. When your husband starts to feel a bit better and a bit antsy, we may have DVDs or other things that he might like to borrow. I have a number of "Great Courses" videos that I'd be happy to lend him if any match his interests.

I know this is all down the road and that you are dealing with more immediate issues now, but keep it in mind, please, if it will be helpful in any way.

These days when persons we know phone, they have begun asking if this is a good time. It is almost never a good time. The last person to call did so at the moment I was trying to assist him with his insulin shot. There is also almost never a good time to call back. Please do not let that keep you from calling though. Just the idea that friends are calling is healing. Please don't expect us to be able to come to the phone right away or be able to chat for long when we do.

Visitors are welcome. Just don't expect him to be available when you come, even if you have called in advance. A lot of his waking time is spent in the bathroom, while his bowels readjust to solid food. At other times he may be so tired that he is barely able to stay awake. Please understand that this is not an indication of his being unhappy to see you. He just needs time to mend.

My major form of communication for now will be this blog. Entries can be made in spare moments, such as now while he sleeps in the next room, and phone tag becomes less of an issue.

Cody: Thank you so much!!! Once I get my head together I will begin developing a list of ways in which others can help. I so welcome both the vicarious and hands on offers of support. Right now, when friends offer help like you did just now, I start crying and find it difficult to stop. Trying to analyse the triggers, I see it as a combination of sleep deprivation, a deepening of my understanding that I am not/need not be alone in dealing with all of this, and the realization that I am not as much of the self sufficient wonder woman that I am striving to become.

Task for the day: Learn to internalize the fact that accepting help from others is not an admission of weakness but of strength.

I PMed you Joan. At least I think I did.

Joan, if you were trying to move a 75-pound weight and asked some people for help, wouldn't that be the smart thing to do? It wouldn't mean you weren't strong, it would just mean you recognized that it was more than you could handle on your own. This is sort of the same situation, in a way. You've always been there when others needed assistance or support, and you will be again, so now it is your time to get some help from others. We're all connected and no one takes all the time or gives all the time - but the connection does everyone good in making us realize that we're all in this together.

mtierney: I received your pm and replied.

Cody: I agree intellectually. Now to educate my emotional side.

I don't know if this is something you might want to consider, but I've seen several friends and friends of friends set up "accounts" on websites that support caregivers. One I was part of recently was on http://lotsahelpinghands.com/. The main caregiver in the family set it up and then invited friends to join via emails, Facebook, etc. There was a calendar where needs could be posted (meals, rides, etc.) and then the friends could sign up to provide the help requested. The website generates email reminders at intervals. Also, it gave the caregiver a way to send out a single update email to everyone who had joined their "community" on the site. This is also something that another family member might be able to set up for you.

Good luck and keep us posted!

Sending best wishes and healing vibes to both of you!

Sac, that's such a clever idea!

Joan, often patient or career support groups will run a short course (maybe 4 or 6weeks, just a short time each week) on Living With Chronic Conditions or some similar title. The course runs through exactly the questions you raise, provides local answers and puts in touch with others who have similar requirements (so you can share solutions/resources outside the course); it also introduces various support structures in the area you may not realise apply to your situation, and there's an after-course follow-up program so you're not left stranded and floundering.

Transport is usually provided, simply because it's one less thing to think about. And it's preferred for both patient and carer/spouse to go, because everyone is affected.

You might need to ask about this, or it could be buried in the bundle of support papers you've been given.

Edited to add a master link:

http://www.state.nj.us/humanservices/dmahs/home/CDSMP_Training.pdf

Also, do ring the nurses in the early hours when you can't sleep and are having a secret cry, or when inexplicably moods are changing every 3 mins... You're not taking them away from urgent work, this is what they're paid to do and they're very good at working out if there's a hidden problem or it's a normal stage of progress.

Sending PVs for continued strength.

Thank you Sac and Joanne.

Joan, sent you a PM.

Joan, when my wife had surgery and chemotherapy, we had a lot of calls. We quickly developed a policy for that. We welcomed all calls when we were ready to take them. They cheered us up. But when we were not around or not able to answer calls, we did not return the calls, because we found that to be too much work. We told everyone we could what this policy was, and they accepted it readily.

I hope things get easier for you, and I hope Bernie heals well.

Joan, if you need an aide once things settle down, be aware that wartime vets who are asset eligible and whose income does not cover their care costs, can receive VA Aid & Attendance benefits. It's a benefit of up to about $2K per month. Before you present to the VA, however, see an elder lawyer about maybe setting up a trust.

You have to take care of yourself. It sounds like you need some breaks built in to your week. It is common that the caregiver spouse becomes so exhausted helping the ill spouse that her own health breaks down, and she passes first, leaving the ill spouse without his beloved. You don't want that.

@joanne: Read your PM and sent reply. Thank you for the information. It was very helpful.

@Tom_Reingold: Thanks for the advice. We are still picking up the phone when it rings because it could be a call from one of his doctor's office, the home health agency, hospital, etc. We also understand that his siblings (one in VT the other in VA) are deeply concerned and deserve to be reassured even if they are just told we will call back later. I am now mostly corresponding with his sister by e-mail but he doesn't (won't) use a computer and she needs to talk with him.

@breal: Thank you for the tip. He is already classified by the VA as a disabled veteran and receives a small pension from them. Bernie McElwee, NJ State Service Officer for the VFW is a friend and we will call him for information and advice if needed. Now that I think of it, calling him might be a good idea.

I finally got him to bed a little after 6 am this morning. He has yet to figure out how to attach a night bag so I helped him figure it out. No more having to wake him every few hours to empty the bag.

We need to get his sugar level under better control. This means doing a better job of putting him on a food schedule and getting his overnight insulin shot in at a somewhat regular interval. High sugar levels caused most of our problems yesterday. This morning he was much more lucid/independent because he had taken his before bed shot, even though it was administered much later than it should have been. Calling the endocrinologist on Monday morning for interim suggestions is on the list. He is also making a better attempt at drinking liquids. He complains that he he is too full to drink as much as he should but he coming to understand that he needs to drink at least as much as he excretes or his kidneys could shut down.

Joan, I am so sorry you and Bernie are going through this ordeal. Hopefully you both can get a little rest today. I am also sending healing vibs and good wishes your way, something like this is never easy. Hoping for lots of strength and energy for you both.

I hope that you don't see this as nitpicking or criticism.

I have been known for having a "tantrum" or two in my life, and I have never found that calling the outbursts "tantrums" was helpful. It is a judgmental and belittling word. It delegitemizes whatever feelings I was experiencing. It rejects those feelings.

Most times if something is a overreaction, it is triggering some memory, some fear that is repressed, and it is that feeling which is fueling the "tantrum". It is the feeling that dresses itself in a trivial behavior that causes outsiders to think of them as "tantrums".

I still remember my mom being really proud while she told her friends about the time that I was having a "tantrum", and she placed me in the shower and poured cold water on me to make me shut up.

Whatever triggered my mom to feel justified for putting me in the shower has been forgotten. What I remember is being crushed. She thought that was great, because I shut up. It wasn't great. The feelings only grew, and not long after, she and I broke off the loving relationship forever. I must have been about seven years old at the time.

If you can't handle the "tantrum", if you are not feeling that you can handle it, just say that: "I am having a really hard time handling this, and I need a break." You are not infantalizing the person when you respond by sharing your feelings. Instead you are respecting the person. You can also offer to discuss it later when you are feeling less stressed. Or you can ask for help, "I am having a hard time handling this emotional outburst. Tell me what I can do to help." If you are feeling OK, just ask "what are you feeling right now?" If the person can manage to express it, that is the end of it. It will loose power instead of strengthening.

@Copihue: I should have put the word tantrums in quotes. It was used to support the comparison with handling newborns that opened that statement. Unfortunately, we have not yet reached the point where I can say I need a break and walk away. Like the newborn, he is still helpless in a lot of ways. This leads to frustration which leads to refusal to do what is best for him. As he gets more independent, things will get better. He is a very independent person and really dislikes having others do anything for him (we are quite alike in that respect) yet he understands that the help is needed and doesn't just ask for it but demands it, even with things he could do himself physically but is not yet ready to take on. We are working on that as well.

Copihue, I understand where you are coming from.

Joan, you are under a lot of pressure with your husband's fragile health and frustration and both of you are frightened. I can't imagine how I would handle such an overwhelming situation. One day at a time. Wishing you strength and calm.

This sounds like a very rough experience for both of you. It sounds exhausting. I hope that you are taking time for yourself; as Breal mentioned, you have to take care of yourself, so that you can take care of Bernie. And I hope that help comes your way SOON.

Joan, I just wanted to say that I am sending healing and peaceful prayers to you and Bernie every day.

On a practical level, no one should have to go through this alone! Would you like us to set up a meal train (mealtrain.com) or as Sac suggests, a helping hands community? Letting the community help you is healing in more ways than one. I know you would be first in line to help others if they needed you. Please think about giving others the opportunity to assist you in the ways that would help most -- from errands and meals to cleaning, silly magazines, or occasional breaks.

Yes. Please set up a helping hands community. Rides to doctors offices for appointments, and someone to sit with him when I have to run local errands are what is needed most at the moment. Once he is stronger, visitors and rides to supermarket, medical supply store, etc. would be appreciated.

I'm on it! Everyone, please send me your emails so I can set up a calendar where people can volunteer. (Emails can go to me at deborah dot gaines at gmail), or inbox me here. Joan, please send me your email and if possible a cell phone or other way to reach you.

I wrote earlier about the hit my self image is taking. Bernie's self image is taking a huge hit as well. He is so weak after the surgery and he hates it. When he first got back from the hospital, he tried to behave as if nothing had happened and tired himself out so much that by the third day he was shaking so badly that he could hold the pen to give himself his morning shot. Last night, he was too tired to make it up the stairs to bed so we set him up in his favorite recliner on the same enclosed porch I referred to as Purgatory when I was making my own recovery.

He also doesn't ask for help very well. (I guess it runs in the family. We are more a family of givers than takers.) This morning he announced that he had to go to the bathroom (he still won't accept having a commode in Purgatory but that could change) got on his cane, walked slowly to the walker which was just outside the room and found he couldn't transition on his own. Since he was completely blocking the doorway in his squat, I couldn't get out of the room to help him. As I was reaching for the phone to call for help, he managed to ease himself down on the floor and then propel himself backwards back through the doorway to his chair and then use the last of his strength to get himself seated again. An hour later we tried again, this time with the walker in front of his chair and he was able to make it on his own to the bathroom.

We have managed yesterday and at least this morning to get him back on a three meal schedule so he can take his shots and he has agreed to drink more liquid. Still his blood sugar is too high and we need to find a way to bring it down to more acceptable levels. I am not sure how possible that will be for awhile given the toll his illness and near death has taken on his body.

Friends: please sign up to help out. @sac and I are coordinating for now: https://www.lotsahelpinghands.com/c/733900/

Joan, if you have an immediate need that you would rather not post here please let us know and we'll get the word out.