Caring For Pops

A Family Caregivers Diary

It’s been a long time…….

The last time I wrote we had just passed the pre-op doctor’s appointment and the waiting game began. It was a short wait and the surgery went very well. He was in and out in about 30 mins and was allowed to come home with in just a couple of hours. He did contract a staph infection from the surgery which had him bedridden and in hallucinations for almost 2 weeks. My family and I were sure that it was going to be the death of him. We were wrong. He bounced back to the normal worry wart that he had always been, just with less danger of falling while trying to use the bathroom.

Over the next few months we had minor issues like bladder spasms, and a few urinary tract infections that kept him and I up for days. Nothing that seemed to keep him down for long though. He started talking about not making it until his birthday in November, but he did. Three days after his birthday we started having problems. He stopped sleeping, was hallucinating pretty intensely, and he was only eating one good meal a day. His primary Doctor put him on an antibiotic for a UTI. Ten days later he was still not better, so his Urologist did a more detailed exam of his urine and found that the strain of infection needed to be treated with a more powerful antibiotic. When this was done Pops and I had a schedule down of 4 days awake and 3 days of sleeping.  That cycled through up until just after Christmas when he decided he wasn’t going to get out of bed anymore.  I saw what was coming, I even talked to his primary doctor about it. I brought it up while talking to my sister, and with my Mom. After a troublesome trip with Pops to the Doctor because of his shortness of breath, and my need to answers, it was suggested to bring in hospice care. Pops was put on oxygen and we were told to try and keep him drinking water, and to force him to move around in bed to prevent bed sores. We had to wait two weeks for home hospice to get all the paper work from the Doctor and to get them to the house for the approval process. Just last Friday on the 25th of January, Pops was approved for at home hospice care, with me being the team leader. Once he was approved things started moving fast. A new oxygen device, a hospital bed to rails to keep him safe since even though he was only eating three bites of food a day he was still hallucinating about “going home” and trying to get out of bed. His water intake had gone from over 90 ounces a day to barely 4. Our hospice nurse told us to not force it, if he wanted to drink then give him what ever it was he wanted to drink, if he would only eat ice cream then stock up on it and let him have it.  I was so relieved to have a support team that I would be able to call anytime day or night if I needed emotional support or medical advice for him. On Saturday the new bed was delivered and Pops was very agitated. Pushing and pulling his blankets off, pulling at his oxygen hose, he even tried to pull his catheter out.  He wasn’t talking anymore, just grunts and vowel sounds over and over again. Once the new bed was set up, my parents and I carried and set him into it, he was shaking his head no over and over again not wanting to be put into the hospital bed. Once he was there he started kicking his feet, but calmed down when I brought him some ice cream and cake. He tried to eat a few bites of it but his mouth just wasn’t working right, so I lowered him back to a laying position and brought him some pain medication. His first dose did not seem to help him so the Nurse okay a high dose this time. I slipped the medicine between his gums and teeth with minimal fight from him. The nurse told me to check on him after 30 mins to see if this dose did the trick or if more was needed. After only 10 mins I decided to go check on him.  At first he looked to be sleeping so calm and peacefully, I stepped closer and noticed that he had no visible signs of breathing. I put my hand on his head which would normally cause him to stir but there was nothing. Franticly, I checked him wrist for a pulse; nothing. I quickly checked his neck, again nothing.  I lifted up his shirt and started digging my knuckle into his bone, no reaction. I called the nurse back and left her a message, I called the emergency hospice number and left a message with their answering service. By this time I knew what was going on but I didn’t want to acknowledge that I was right. I raced up the hallway again crying out to God telling him that I wasn’t ready for this, that even though just a few hours before I had told Pops, that I loved him and that he was the best Pops anyone could have and if he wanted to leave that it was okay because he needed the rest and relief. I wanted to badly to be wrong, I called my parents who were on their was out of town, I told them as I cried that I thought Pops was gone, I needed them to come. They turned right around. I called my sister who was at teh grocery store picking up things for us, more ice cream, soft cookies, diapers, wipes, soups, and coffee all for pops. My sister started crying and left the grocery cart full of items in the middle of the store and drove here. The nurse called me back and asked me a few simple questions and confirmed what I had been hoping was my wrong diagnosis.

Just 10 minutes before he had been laying in his new bed, breathing and heart beating, then a gave him morphine. Not even a powerful dose, the amount given in a full grown healthy adult would be like taking an aspirin. The nurse asked me how I was doing, so I told her. I felt like it was my fault. I gave him the pain medicine, I was the one who wanted him to be calm and get some sleep, I was the one who asked these people to come into our home and help make him comfortable. I approved of letting him just die.  I cried uncontrollably, as the nurse asked me some very specific questions about his behavior: was he pulling his bed sheets off? Yes, Was he trying to take his oxygen off? Yes, Was he trying to pull at his catheter? Yes, Did he kick his feet like he was running? Yes. I was then told “oh honey, what he was doing is called terminal agitation. That’s when they want to ready their bodies to go to heaven. You had nothing to do with this. All you did was relax him enough to allow him to go home quietly and in peace.”  that was enough for me to gain a little more control. She then told me ” You gave him that larger dose just 10 minutes before you called me, it takes longer than that for it to take effect. So, see you did not do anything wrong. It was not your fault.”  She and I talked a few more minutes and I was able to gain control of myself and she had to go to start the process of getting him taken care of.  My sister arrived, and we cried, my Parents arrived, we cried, My brother arrived, we cried. This went on all afternoon, and evening. I was right, my reason for living the last 5 years of my life was gone. My sunshine had finally set…….I am left here in the dark.

I close my eyes at night to sleep, and I see him laying there with no breaths escaping his lips. I am jolted awake when he suddenly inhales, eyes popping widely open.  By the time I am able to actually fall asleep I am awakened by the thought of needing to check on him. Every two hours I am awakened by that thought, only to get upset because I don’t have to do that anymore. Late today we will be laying him body down to rest with my Nana. He will be receiving full military honors, flag, Taps, gun salute………I am not ready for this new stage of our lives. I just want him back here, in his home where he belongs. I want my sunshine back in my life. I don’t like the dark, it makes me feel alone and empty.

Life with a Worry wart!

I remember as I grew up leaving Nana and Pops’ house being told “Call when you get home!!!”  Now we never lived more then a 15 min drive from them. So if we forgot to call them the second we walking in the door a minute later the phone was ringing with Nana on the other end literally yelling at us for not calling! As we all grew up we learned to answer the phone saying “Sorry Nana!! We just walking in the door!!” it made the scolding not as long or as loud! Then as we become teenagers and young Adults it was still the same way. Call when we got home. Even if it was late at night. If you went out it was her you answered to, not our parents. She loved us all so much that she worried non stop.  We never realized Pops was just like Nana in that way. Not until she passed away. Then all the sudden if he didn’t hear from you at the normal time on the normal day for your weekly call he would fret and worry then cry to you on the phone when you did call him. When I first moved in with him I was still young and partying with my friends. Dating people here and there. If He didn’t get a call from me by midnight of me telling him that I wasn’t going to be home until later he would sit up standing and staring out his bedroom window that faces the parking lot with a mean worried look on his face. Then after the birth of Bug it turned to worrying about me going and doing anything outside of the house. Including just a trip to the store! This worrying from his has caused him to have chest pains and has gotten him admitted into the hospital on numerous occasions. Not to mention the fights and arguments about me being a grown up. Those all happened before he needed any kind of assistance from me. I was just a screwed up kid who couldn’t make ends meet so he gave me a roof over my head. I’d get tired of hearing him complain about my young and stupid lifestyle so I’d hide in my bedroom anytime I was in the house. Anyway, He’s worried about every little detail in life that can’t be controlled, as well as all the little things that can be. I learned quick how to tell when he was having a panic attack because of a worry.

Now that he’s had to give up all of his normal household duties like fixing the clogged sink, or making any kind of minor home repair. He’s spent a lot of time fretting over these items. a few weeks ago we had a clogged drain pipe that took me 45 mins to unclog only to figure out that there was still more that I couldn’t reach because it was in the wall. Things like that are handled by the HOA here. So they called in a plumber and the whole time Pops sat in his chair straining to hear what the guy was saying and doing. Then spent the next 2 weeks asking me over and over again to explain to him what happened and how the guy fixed it as well as what had clogged it. Every day I would repeat what was done, and what the stuff was and how it was done. He would sit and worry that I had to handle that when he should have been the one doing it. And that we had to call in a plumber.  I see him as the man of the house that he used to be and wants to be again. He even worries about problems with neighbors and their homes and vehicles.

Every other weekend Bug goes and spends 4 days with her Dad. While she’s gone I have to calm him and reassure him that she is fine and that he does take care of her. He normally won’t sleep a good nights sleep until she’s back home. He greats her with tears telling her how glad he is that she’s home, that he missed her with all his heart. She comes back refreshed and ready to jump back in on the helping with him. So she hugs and kisses and cuddles him to assure him that she’s glad to be home too. I on the other hand HATE when she goes because it means I have to spend the weekend defending my choice of letting her spend time with him. And putting up with a weekend long panic attack from him. He’s worried she’s going to be kidnapped, hurt or corrupted by her paternal grandparents that aren’t the nicest or loving people in the world. That’s a story for my other Blog.

Then there’s the worries about me and my health. Those I can understand and totally agree with. I have major depression, anxiety, recently diagnosed with Diabetes, Thyroid problems, a Smoker, suffer from insomnia, and I’m obese. I know his worries about me used to cause him to do more then he should have such as still trying to walk around the house after losing his eye sight, Not wanting me to help him with anything, Constantly asking me if I want help cooking or cleaning. The one thing he does that drives me insane is apologizing over and over and over again because he can’t help me. It took me crying and basiclly having a break down for him to agree to wear diapers a few months back because he was trying to help me by not having me help him to the bathroom in the middle of the night. I would spend DAYS without any sleep except for a few  minutes during the day when I knew he wasn’t going anywhere. Since that break down he apologizes continually about having to use a diaper at night. Now with his new temporary catheter he’s sorry for me having to take care of that. I can’t get it thru to him that since he’s gotten that I’ve been so much more relaxed and at ease with everything in the house.

Last weekend I had to spend hours trying to calm him down for his pre op approval from his primary Doctor as well as the normal Bug’s weekend at her Dad’s. He didn’t sleep much all weekend long. he was to busy worrying about if he had made the right choice concerning that catheter. Worrying about if he can afford it, what exactly would be done, and the possibility of pain. By the time Monday rolled around he was in a total tizzy! He didn’t sleep the night before, didn’t eat anything the morning and afternoon of the appointment. He was so dizzy, and so out of breath I couldn’t even give him his shower, and shave. He just wasn’t in the mood or physical well being to tolerate it. When my sister arrived to take us he was stressed out and just wanted it all to be over. As did I!  But it only got worse when we got there.

We sit in the waiting room for 30 mins past our appointment time. The whole time Pops is sitting in his wheel chair on the verge of tears and on the verge of getting up and trying to walk out of there! My sister and I had to keep him engaged in conversation to keep him calm. Once in the exam room we waited another 30 minutes for the Dr to come in. The nurse who took us back registered his BP at 98 over 70. As we sat there waiting Pops started his panic attack behavior, dizziness, chest pains, rapid breathing, and a look of utter discomfort on his face. Just what I must look like when I’m having a panic attack.  Once the Doctor rolls in he takes Pops’ BP and it’s jumped all the way to 137 over 80. Since Pop’s has a tendency for low blood pressure the Dr was pleased with that jump. Until he notices all the other symptoms.  He was worried until I explained that Pops suffered from worry wart syndrome and that he was just having a panic attack because of all the stress and waiting. The Doctor continued his exam to see if Pops was healthy enough to undergo surgery. We got the green light.

On the way home we could tell that Pops was feeling much better because he turned to my sister and said…….”Dinner is on you!! I just love it when you foot the bill!”  So we got to enjoy Burgers and Fries on my Sister’s dime. Poor Pops passed out in his chair the rest of the evening, and spent all most all day  today sleeping. He didn’t even notice that we made a run to the store. So glad he’s over that worrying. Now for the surgery worrying where none of will sleep until it’s all over and he’s safe and sound!!