From a Different Perspective: (Dan’s Wife)
#2JustJanetSpeaks_Part2
(My first post was on January 11th)

Good Afternoon,

I guess I will start at the turning point of how we got here at this Hospice House. First of all, it was quite the nightmare just getting the correct information between the insurance company and various hospice homes prior to Dan being accepted to this particular hospice home which looks like a five star hotel. We are so blessed. Somehow God has put people in our lives to assist in these situations. In this case it was our very dear friends from NY who travel here in a heartbeat the minute they hear Dan is back in the hospital. He and his wife have advocated for us on more than one occasion during Dan’s illness. They are both in the medical field so they have experience.

Dan and I have talked about everything you could possibly talk about no matter how morbid the subject because this has become our reality since he was diagnosed with brain cancer back in March 2012.

We talked about topics that no one wants to discuss but, we didn’t have a choice. We’ve already planned the funeral, picked out the readings, songs, etc. together and picked the cemetery…went back and forth about cremation vs burial and so forth. We talked about the collation after the cemetery too. We planned gifts from Dan in his memory for each of our children which was a nice idea we got from another dear friend who lost her husband a little over a year ago. Also, spoke about Dan writing personal letters to each child and possibly making a video for our future grandchildren. We were blessed with the last five years to discuss all of this although much of this was figured out more recently. I had to get power of attorney which we probably should have done years ago but, waited until recently and then scrambled to find a notary to come to our house now that Dan was house bound.

My advice to all of you is, as morbid as it sounds, please discuss what your loved one’s and your own wishes are ahead of time because you just never know….not that I want people not to think positive but, it is necessary to plan ahead for situations like ours. Dan’s illness literally occurred overnight-no warning at all. We are actually lucky that we’ve had the last five years to discuss all of this but, some people never get that opportunity so it’s nice to know in those situations. Don’t put off doing your wills while trying to avoid that morbid topic especially if you have young children who you need to plan for in case of a sudden death. No one likes to think about it but, unfortunately, it can happen. Lastly, make sure have life insurance policies. Be smart-Always plan for the future. Get it done now so that everything is in place and then you won’t have to think about it or wish that you had done it when it’s just too late. Put everything in place and then put it behind you and live your life to the fullest!!!

Among all of these discussions we talked about what would happen in the end when Dan could no longer care for himself….another fun topic! This is also something that we didn’t figure out right away. In fact, we didn’t figure it out until visiting another very dear friend a little over a year ago who was unfortunately also in a hospice home. After visiting there, Dan said to me, “That’s where I want to be when I can no longer care for myself. I want my dignity and I don’t want you and the kids helping me with bathroom issues etc.” Then he said, “I don’t want to die at home. I don’t want that memory for you and the kids.” We both agreed after having experienced what a hospice house was like from visiting our friend. That is what we wanted. We saw first hand from our visits there that it was very peaceful. The pain was managed by the staff along with all of the care and now his wife who had been his full time care taker at home could finally be his wife and just be there for him to help him through and hold his hand. She is a nurse, a very caring person and even she realized that his care had become impossible for her to handle on her own at their home.

We’ve seen both sides-When hospice is at home until the end vs a hospice home. Hospice at home is very difficult for the family even with a small frail person because at the very end, they have absolutely no strength and become dead weight and almost impossible to change or get onto a camode.

Helping Dan in and out of bed and getting him to the bathroom which was only a few feet away, became impossible for me due to the size difference between Dan and I. If you know me, you know that there is a significant size difference between Dan and I…lol!…I’m 4’9″ about 115 lbs and Dan is 5’11” about 230lbs. Dan became much weaker after his seizure on New Year’s Eve-a horrific night for all of us to have witnessed…although Dan didn’t remember a thing. He came out of the seizure, looked at all of us standing around him with the look of fear on our faces and said “What’s all the drama?!” Leave it to Dan right?! His body became much weaker immediately after that seizure-very sad, but, now he could no longer pull himself up from laying to sitting like he could the day before. He normally just pulled himself up using his bedrail but, now he had no strength. When I got him to stand, his left leg would give out and he would start to fall…then he would say “remember I told you that my left knee was bothering me?”, even though he hadn’t said such a thing. I think he was just embarrassed at his new weakness. This was a sign that I was told to look for-additional weakness on the left side….the cancer gave him no use of his left arm and weakness to his left leg since he was diagnosed almost five years ago…luckily it wasn’t the other way around and he was able to walk on his own until now. He took a few almost falls especially when getting out of bed recently-this had become an almost impossible task.

Dan was staying on the first floor of our home in the family room in a hospital bed and I would lay in his bed with him and then sleep on the couch beside him once he was ready to sleep. I couldn’t sleep but, didn’t want to take anything to help me sleep because I didn’t want to be groggy while helping Dan during the night…..Think I was running on pure adrenaline because I wasn’t tired at all even after a full month of barely any sleep. He would get up 3-4 times a night to use the bathroom. One recent morning, I managed to help him sit up. He moved forward after sitting on the end of the bed and began to slide off when he attempted to get up. Now he’s sliding off the bed onto the floor and I’m braced underneath him attempting to stop his fall because once he’s on the floor it is almost impossible to get him up, even with help. (We’ve had to call the fire department a couple of times to pick him up off the floor just prior to finding out that a new tumor had grown and I didn’t want to have to call and bother them again.) So now it’s about 3:30 am and I’m underneath Dan on the floor trying to prevent his fall. He kept telling me to lower the bed…if only my arms were just a little bit longer…lol! So now I decided to yell for Rachael, my youngest daughter (we still have two girls at home) as loud as I could so that she could run and get her boyfriend who was thankfully staying over to help us. I screamed out her name-scared the living daylights out of her because I just yelled her name and once she answered, I yelled that dad is falling out of the bed and I need help-hurry!!!!!….the poor thing was so disoriented! Her boyfriend couldn’t help but hear all the commotion and came to the rescue. It took all three of us to get him back to a safe place on the bed. This happened more than once.

It went from that to having to have one of Dan’s brother’s or my son staying with us 24/7 after Dan’s seizer in case he needed to use the bathroom. We were at the point where I had to use a urinal for him because he no longer had the strength to get out of bed. He really went downhill fast. We were already at that point that we had originally discussed where he was ready for a hospice home. I still felt very guilty about no longer being able to care for him even though that was our original plan. I kept second guessing myself as to whether or not it was really time to go and Dan kept reassuring me that it was. Then it was confirmed by the nurse from the VNA once I explained everything that was going on to her. I felt a little better once she told me it was definitely time and I was doing the right thing. In fact, she said to me, I’m a nurse and I had to put my mom into a hospice home because I could no longer care for her.

We are enjoying and cherishing our time together with our family. I am so lucky that I’m allowed to live here at the hospice home with him.

I wrote this for the same reason that Dan is documenting his hospice home experience…Just hoping to help people if and when it comes time that they have a loved one who may need a hospice home or for people who are preparing for a loss.

Stay Strong-God Bless ❤️

Love,<<
net<<
p>