Things I wish I would have known

Power of Attorney, Last Will & Testament, Guardianship and Conservator.

After 23 days at KUMed, 13 days at Kindred Ltac Hospital, and 43 days at NKC Hospital Acute Rehab, they put her in my care. What Now???. It was then that our personal space was invaded while she needed home care and her journey to recovery. Our world as we knew it was changed forever.

I never would have imagined that I would be caring for someone with a brain injury, providing assistance for activities of daily living, total financial, social and emotional support. Which brings me to my first item of events that I wish I would have done after we married.

I know that you probably have thought about a Last Testament and Will. Well do it. Also look into a “POA” Power of Attorney. Both of you need to sit down and talk about, “What would we do if something happened to us”. The children, family and our, what little estate we have.

The first thing the hospital is going to ask you, do you have a will? This didn’t hit me until they asked me if my wife would not respond or the possibility of being brain dead. Was I going to have to make the decision of “pulling the plug?”

Our Will really wasn’t enough. I eventually got with an attorney and had a POA “Power of Attorney” written up for myself and also for my wife. Although the POA for my wife was irrelevant because of cog nativity. Make sure you do both, Durable Power of Attorney for Health Care Choices & Health Care Choices Directive, and Durable Power of Attorney, for the financial stuff.

If you do not have those you will no doubt have to get Guardianship. She will have to have a legally appointed conservator. This will cost you probably not only more money, but especially, more headaches.

One thing to pay attention to is the “Case Worker” or “Social Worker”. That person will be assigned to you at every hospital or care facility. He or she will help do all of the ground work for you. Take notes if you possibly can. You can get plenty of “free” help. You just have to turn over some rocks, so to speak, to get there.

Another thing that should be done during this “Will” hunt is to make sure both of you have all your assets and debts between the two of you in writing. Otherwise you are going to find yourself calling the bank, work, insurance, and any other accounts or transactions. And guaranteed they will not give you any information unless you have POA or are the conservator. This was one of the most frustrating things I had to deal with. You also will not get long term disabilities and Social Security benefits without this. There is so much out there to put in writing so eventually I will add more to this in other blogs.

Hasta la próxima.

Take a Breath and Count to Ten

Have I not commanded you? Be strong and courageous. Do not be afraid. Do not be discouraged, for the Lord your God will be with you wherever you go. (Joshua 1.9)

I am sure you have heard this many a time. Sure it is comforting to hear, but I wanted to hear someone tell me that she is going to be ok. It’s ok to cry. We will be by your side to help. Don’t worry about your job, your finances, and your world.

Some bad days, and some good days. There is no way to prepare yourself for anything like this. Find a friend or family member to talk to. Start a journal. Try to always be with someone to keep you company and or just to keep you from curling up in a fetal position sucking your thumb with a bowl of oatmeal upside down on your head.

When the Acute Rehabilitation was over, due to the insurance policy, as discussed by the Case Worker assigned to her, we had a “Family Meeting” with the Therapists and Doctors. The advocate for the Rehabilitation Institute of Kansas City was there to discuss with us what an Outpatient Rehab option would do for her. It would be a more aggressive and strenuous route than Home Health, but it would give her more opportunity to improve in every category. The other option was to get a home health nurse, who would come to the house daily and for short 1 hour periods of time to help with the care. The home health nurse would be a great transitional assistant from hospital to home. I decided to utilize a home health nurse for the first two weeks, and then start her in the Rehab program. I learned a lot by watching the nurses and the therapists at the hospital, but when we got home, I learned even more from the home therapists. Easy ways to get her from the bed to the wheelchair, to the commode, to the chair. Washing her hair and keeping her clean. That was just a few things but just the beginning of my new life. I am still not sure why I stepped up to the plate and did what I had to do.

My wife will struggle probably her whole life to some degree, with short term memory. Her concept of time is also compromised. She will have a thought, and lose it about halfway through communicating it.   Sometimes she will make off-the-wall statements, and then laugh at herself. One of the many things I was not prepared for was “Over Stimulation”. Too much of it would cause her to be fidgety and irritated. It’s not that she doesn’t want anyone there; it was just too much for her brain to process.  She would continuously rearranging items, without much rhyme or reason. It seemed as though she was trying to make sense of it all, but just couldn’t quite connect the dots. If you asked her what was on her mind, she was unable to get it out. A lot of times when she tries to communicate verbally, words come through here and there and she uses a lot of hand gestures. Unfortunately, it didn’t work and she became visibly distressed. She would get dreams and reality mixed up. We would be watching TV, like the news, and see that there were forest fires in Colorado and our cat would be crossing the floor to the other room. She would take an old memory and it would get mixed up with anything going on and it would be reality for her. It would totally confuse me until I eventually figured it out with the help of some of the Therapists. For instance, her reality would be of concern. “Joe, you better go get the cat because she took my coat and is running down the street because the house is on fire”. She would be terrified. It doesn’t take much for her to get distracted. If there is a lot going on, it will still overstimulate her and she seems to kind of escape in her mind. Most often, if she has been over-stimulated she will begin to ignore everyone and stare off at the TV or out the door at people walking by. That is why it has been so important that I keep the number of people around her at one time to a minimum. When we get home, the goal is to keep visiting hours specific, so as to get her on a routine schedule. We must remember that she doesn’t have the memory or cognitive ability of an adult anymore. Her brain is still healing and will continue to do so for the next several years. In time, her mental health will continue to improve.

Well, Hasta la próxima.