I’ve been keeping a blog entry of what has gone on with my dad most of this year, really for my own sake to keep things straight in my head (there is only so much room up there, you know?)
- My dad passed away this morning about 3:15 am. My sister went to watch the LSU game with him last night and the nurse came in and they adjusted his position. With his condition (missing hip), it ended up putting him in a lot pain, and he started breathing rapidly and shallow. Karen called me about 8:10 pm so I went to check on him and them, Clint was already there.After 3 rounds of morphine, by about 10:15 pm he wasn’t any better so Hospice came. The nurse was great and spent 3 hours with us, but after initially checking him, she believed that he would pass in the next 24.
It wasn’t until about 12:30 am that dad’s breathing leveled out and it didn’t seem like he was struggling to breath. Jen came up around 10:30 or 11, and my mom stayed with the boys. Mom flew in on Friday night to be here for support for us.
We were all sacked out and I was jolted awake (by God, if you ask me) about 2:45 am from a deep sleep and looked at dad and didn’t think he was breathing. I watched him for about a minute, then woke up Jen and told her and went to get the nurse (LPN) then she checked, and went to get the RN, who said he was still breathing, just a little, but he was about to pass, so I work up Karen and Clint.
We were all with him when he passed and it was very peaceful. I truly believe God woke me up so we could be awake and loving on dad when he took his last breath.
- October 4, Karen called me at one this morning. They’ve started dad on the morphine for pain. We expect him to slip into a comma soon and what communication we had with him will probably be no longer.
- October 3, I believe dad is beyond being able to voice his needs verbally. He was able to eat and drink some today, but his kidney’s have been shutting down all week. I had some time to visit with him tonight by myself, and it was good for me, and I hope good for him. He ran a low grade fever this morning. As of now Hospice is not giving him strong medicines for pain. We are all very tired, and prayers are welcomed for strength and for dad to pass soon, and peacefully.
- October 2, Dad has a much better day, and while he started the day looking to be non-responsive, he started responding later in the morning. Tonight he even asked me to turn up his tv. He drank a few cups of water, but didn’t eat a whole lot, but at least at some. It is really hard for him to swallow, is what Karen saw.
- October 1, Karen and Clint (and family, Lezlee and their little girl) are still here. Dad had done really well, alert and able to talk to them, while still hard to understand, until today. Today he was non-responsive all day. He has not eaten or drank much and appears to have taken a turn for the worse. His breathing is very shallow as well. Karen and Clint have extended their stay because we do not believe he has much longer.
- September 30, Karen flew in last Thursday to see dad. After talking to Clint on Friday, he came on Saturday. So the weekend had lots of visits with all of us and he stayed worn out. He knew who everyone was and called us by name.
Yesterday he was saying he felt short of breath and ask something for his asthma? There is an oxygen machine in his room, so the nurse put it on him (under his nose) and we left so he could reset. When Karen went back later in the evening, she said he was feeling much better, but wore out within 5 minutes. She also said he drank some of the thicken liquid that he had previously refused. She said it looked like tea.
- September 23, Today I checked into Hospice of Caring Hearts for Dad (check out who did their web site, ha!). I had talked with a doctor and nurse that I go to church with yesterday, and then dad’s nurse today. They all mentioned this company without me asking. His nurse mentioned one other company that had good services, but said she really felt like Caring Hearts would connect more with dad and his personality. I meet with Caring Hearts this afternoon and they went over everything and had already sent a nurse to evaluate dad. She said Medicare has gotten really strict on what qualifies a Parkinson’s patient for the service, but she felt like if he didn’t qualify that way, he would qualify because of his weight. The difference in the qualifications is what they are allow to pay for. He qualified for it as a PD patient, which means they will take care of his medicine.
What I found out about hospice over the weekend (and today) is that is their focus is on adding supplemental care for their patients, so they are who gets called instead of them sending dad to the hospital. The focus is providing comfort for the patient, over trying to extend their life. Most importantly, education, educating the family on what is going on, and what options there are, not making the choices but someone to go to for answers.
It will take a couple of days for them to finish the paperwork, but by late this week, they’ll be going out to assist with dad’s care. Dad will get some one to one care that he normally doesn’t get at the nursing home, because it is more like a 1 to 15 ratio.
- September 20, Last week dad had a swallow test given and he failed it. The test was ordered because he was aspirating, meaning when he swallows some of it goes to his lungs. He has always told us he didn’t want to be kept alive by machines or a feeding tube, so when the recommendation was made for a PEG tube, we declined in favor of comfort care. He is on blended foods and think liquids, but he continues to lose weight.
This week’s weight was 108 lbs. He is staying well hydrated, but just isn’t eating much. The question was brought up this afternoon about him having Hospice so that is something we are looking into.
- August 30, his weight is at 115.7 and there is much concern that if he doesn’t start eating that a feeding tube is the only option. The last 2 months has really taken a toll on his health, he is very, very thin.
- The doctor was unable to get the hip back in place on August 24, but he did not open him up this time. I talked to the doctor on August 25, and we decided the best option was to remove the prosthesis and he live the rest of his life without the left hip. He was in the hospital 6 days this last time and his weight dropped while he was there.
- August 23, he was taken back to the hospital because the hip, once again was out of place. I had talked to the nursing staff at a caregivers meeting on August 22, and the nurses explained they can’t get him to keep anything between his legs. If they put a “block” he just takes it out as soon as they leave. Weight was talked about as well, but he had actual gain almost a lb over the last week.
- August 1, his hip came out of place again and they could not get it back in place without doing surgery. He had a rough surgery and they had to fill him up with another pint of blood. Dad had damage the hip prosthesis so badly it had to be replaced. Weight still is an issue, down to 137.
- On July 19, he was taken to the hospital because his hip was out of place. They were able to put it back in place without having to open him up. He REFUSES to sleep with a pillow or a block and sleeps in the fetal position, which is not good for a hip replacement patient
- July 3, a private room opened up, while he has been in a “shared” room since April 1, he has never had a roommate. He was on an older wing of the facility and I felt like in the long run, he would be happier without the fear of having a roommate and in a newer room. He was moved to his new room on July 3. His weight is still a concern, he is down to 140 lbs.
- On May 13, he fell and broke his hip. They replaced his hip. June The Nursing home is concerned about his weight, He is down to 145. They are giving him extra supplements and ice cream. I bring him candy pretty regularly as well.
- In early May, Dad seemed to be improving, physically, at Ruston Rehab. He still gets pretty confused about where he is… he seems to be better earlier in the day. The few times I’ve gone after work, he seems tired and more confused. He is having PT/OT at least twice a day, and seems to be doing well. Yesterday he was able to stand up from his bed without any help from me, and he wanted to do it by himself. He had two BIG trees blow down on Easter Sunday (I had one, but it didn’t do much damage except to other trees). His took out the power to the shop and stretched, but didn’t break the cable line. One also pulled up what we thought was a water line, but turned out to be a power line run through PVC pipe. Glad no one got hurt when trying t repair it.
- Cognitive problems, such as dementia, hallucinations, or loss of intellectual capacity, usually in the later stages of Parkinson’s disease. Lots and lots of decisions had to be made at the end of March, really in less than 2 days, besides which nursing home I thought was best for him, his insurance needed to be changed from Medicare Advantage to Medicare as the primary and selecting a supplemental insurance plan.
Lots and lots of prayer got me through that week, and people God has placed in my life came to my aid.
- He fell on March 9, 2013 and broke his upper arm and after a 2 week stay at Rapides Regional Medical Center, then another 2 week stay at Oceans Mental Health facility, he was moved to Ruston Rehab in Ruston, LA where I live.
- My father was diagnosed with Parkinson’s Disease in late 2005/early 2006. Parkinson’s disease is a progressive disorder of the central nervous system that causes tremors, muscle stiffness, slowness of movement, and poor balance and mobility.