Caretaking 102 - The Aftermath

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Joan, I am reading your blog and your new reality with great interest. For years, you have been MOL's voice of reason, and I am positive that clear headed thinking will kick in very soon. You will soon be guided others and the fact that you are eager to have folks help you now is the first sign!

joan_crystal said:
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. .....

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.)

Oh Joan, I can appreciate the challenges you an Bernie are facing with this. While hubster and I have not experienced a serious medical issue together, one of my greatest fears is that he will face a serious illness that will require assistance. I know his first response will be to maintain independent and refuse my--and, outside--help. Adjusting to that 'new normal' will take time and experimentation for both of us. (OTOH, however, I am confident he will rise to the challenge if I am the one needing care since he has already proven to be a good caretaker following my less debilitating surgeries.)

Sending virtual hugs to you and Bernie.

Joan I meant to comment sooner, but we were out of town visiting family who have health issues, and my iPhone is terrible for posting.

I hope you and Bernie are settling into more of a routine. It is very difficult to ask for or accept help when you have been independent for so long, and it is a terrible shock to the ego when you can't do things today you took for granted yesterday. Both of you will need a boatload of patience. Be gentle with yourselves.

As Bernie gets a handle on what he can do and how best to approach mundane tasks that seemed so easy before, the strain will ease somewhat. Meanwhile, there is no shame in letting others help, as I know you have helped others in the past. And make sure you are taking advantage of all the post-operative services you are eligible for. There are social workers in the hospitals who can help you learn what resources you can tap into aside from the nice folks on MOL or in your congregation.

Hang in there. Wish we were closer so I could run some errands for you or provide other support!

It sounds terribly difficult. I'm sorry.

We spent most of the day in the emergency room. He was admitted about half an hour ago and will at least be in over night. Major concern is severe dehydration.

D said he's glad you called for medical help. One of the things that helped him most, the first 6 months he was adjusting to life post-rushed-surgery, was using that 24/7 dedicated medical call line in the hospital.

We learnt quickly that a stubbornly high bgl (more than a day) meant the beginning of an infection he couldn't detect and that he couldn't fight.

We learnt that seeking assistance gave him more independence, and resolved emerging concerns faster, than persisting in silence and frustration (because often we were overlooking a very simple solution).

D said in his family, the men think accepting help is a sign of weakness, and creates an obligation you have to repay one day. He said to tell Bernie it doesn't work that way when you're recovering from illness like this!! Accepting support is strength, because it allows others to show they care and respect you, when they don't know what to say. ><

joanne said:
Accepting support is strength, because it allows others to show they care and respect you, when they don't know what to say.

These are wise words. And I suspect they are true for both patient and caretaker. My father was very ill for ten years before he died, and all of us lived this every day.

Helping Hands has been a G-d send. Thank you to the wonderful, kind friend who has offered to drive me to the hospital for a brief visit tomorrow. Now I can get there to see him and bring him his cell phone so he can make outgoing calls more easily. It also has phone numbers stored that he may need.

Last night I got home from the hospital to find that a neighbor had dropped off a package of homemade muffins for us. That simple gesture brightened what had up to then been a dreadful day full of stress and worry.

Bernie and I have always felt a strong attachment to this community, IRL and virtual, in which we live; but, it has taken a serious turn of events like this for us to realize the strong attachment that others in this community feel towards us. There go the tears again. Please if you see them or hear them in my voice know that they are tears of love for and appreciation of all of you.

I suggest DDK (daily dossage of kisses)

{virtual hug}

mjh said:
{virtual hug}

Here too.

wendy said:

mjh said:
{virtual hug}

Here too.

From CT, too!!

Thank you all. It is amazing how powerful those virtual hugs can be.

Dose of reality: A neighbor stopped me in front my house this morning as I was returning from running a quick errand. She asked how Bernie was doing and we got to talking. She told me about the death of her first born child who was born with multiple medical problems. I can't image what it must have been like to deal with that on a daily basis and what it still must be like to dwell on the memories so many years later. The issues I am dealing with now pale in comparison.

I spent a quick hour returning all the phone calls I found recorded on the answering machine when I got home last night. It is amazing how easy it is to get through to others at 8:00 am. The doctors' offices who called to schedule appointments have been told that he is back in the hospital, the pharmacy has been told that we will pick up the medications he has on order once we determine if there are any changes needed as a result any conditions revealed by the tests the hospital is very likely taking to assess his current condition. For example: I assume if he no longer has a prostate he can stop taking his prostate medication but this will be verified with his doctors. Tears welled up in my voice again as each person I spoke with wished both of us well.

Thanks for keeping us posted!

Be sure to let us know about any of those sorts of errands (pharmacy pickups, etc.) as well as rides or meals or anything else you may need when you know. You have a growing community here that wants to help!

Joan, don't sell your situation short. It's easy to see that someone else is in more dire straits and feel that your own suffering is somehow not as "worthy" of attention, but that's a false premise. Let yourself feel the anxiety and pain and frustration, and don't compare it to what others are suffering or have suffered in the past. Your worries are valid. I remember feeling ashamed when I saw a woman at physical therapy who had it much worse than I did, and I felt guilt at complaining. But a wise nurse told me that what I experienced was just as valid.

Not very comforting, I know... but don't make comparisons. You are going through a painful experience, and it's okay to complain and ask for and receive help!!! You guys are loved... let people show it.

Thank you Peggy. The comparison feeling kicked in again when I saw a friend at the hospital who was there to see his paralyzed son who is having medical issues that the doctors have not as yet been able to address, let alone identify. We each offered the other what support we could and I know both of us are in a difficult place right now. The difference is that he has been dealing with his son's condition for three years and I have been dealing with Bernie's current medical issues for about three months.

Update: Just got back from seeing Bernie in the hospital. He looks so much sturdier and more alert than he did yesterday. He is still on IV fluids and that is making a huge difference. The phone is now next to his chair so he can reach it. If anyone wants to call him, the number is 973-322-8640. I was also able to drop off some treats that a neighbor baked for him and see to it that he ordered some lunch. Plan is to keep in touch by phone for the rest of the day.

Joan, as you are someone I admire and appreciate, I would be there helping you, too, if I still lived nearby. I wish I could.

Thank you Tom.

Triumph of the day: After three days of searching, I finally found his eyeglasses. Thanks to a wonderful offer from someone I don't think I have ever met in person, I will be able to bring them to him tomorrow.

I hope that the doctors keep Bernie in the hospital. I think that they sent him home too soon without sufficient support which stressed both of you out. He may feel more comfortable asking for help from a professional instead of someone whom he has cared for all his life.

From the way he sounds this morning, I think they will be keeping him a bit longer. He probably senses this too since he asked me this morning if I would bring his razor when I go in to see him this afternoon. He complains that some levels are too high and others too low (assume he means blood pressure ((which has been low)) and sugar ((which has been high)) but I will learn more when I see him. I hate to hear mild depression in his voice. That is so unlike him.

One thing I learned yesterday is that I needed complete rest just as much as he did. All the great plans I had of doing things with the free time I have now pretty much devolved into soaking in a hot tub, sitting in my favorite chair, watching really dreadful tv programs, and going to bed by 7 pm. I slept for eleven hours and feel like I still need more. I think of myself as being high energy but there is a limit to the amount of energy most of us can expend without having some means of recharging. Over the past several weeks there has been too little recharging. I need the human version of an electric outlet and an extremely long power cord.

Copihue is likely right that he was discharged from the hospital too soon and we certainly did not receive the support he was promised in a timely fashion. Things will be better this time (I hope) now that we are armed with a list of phone numbers to call and the overwhelming support we are receiving from friends.

I will post here again after I have seen him. For now, it is back to the comfortable chair, the bad tv, and some relaxation exercises.

Anxiety can take an enormous toll on the body that you can't really foresee. I'm glad he is back in the hospital getting back on track, and hopefully you now have a much better support system in place for when he comes home. Deep breaths and lots of sleep. Don't forget to take very good care of yourself!

Peggy: Even sitting quietly for a brief while can cause guilt feelings now. Thanks for re-enforcing the conviction that listening to my body is not entirely an act of selfishness. Time for that attitude transplant to take hold.

Is it totally irrational to fear that he is going to be discharged just as the hurricane hits?

It is not selfishness... If you feel guilty, just remind yourself that Bernie will need you to be strong and refreshed, too! The better shape you are in, the more help you can provide, and the more alert you will be to make wise decisions about how to arrange things for both of you. Giving yourself breaks and good care is a smart move.

I understand your fears about the storm coming. I'm nervous myself, and I don't have someone to care for! I would suggest making a checklist of supplies to have on hand, just in case power goes out or some such, as well as phone numbers of people you can call for help in quick order. And let those people know if he does come home, so they can be on standby and know what you might need if the storm is worse than anticipated.

Being well prepared, just in case, will help you feel calmer, I think. Even if it turns out you don't need the help.