Well, it's been a long road to hoe, but Dad passed away on March 14, 2018.
While it was not a stroke that did Dad in, I'm sure the history of the stroke and diagnosed vascular dementia helped. Per the death certificate, the doctors called it "End Stage Dementia".
Lots happened since the last time I was on and even posted, but as a quick timeline...
Dad lived with me until April 2017....
April 2017 - Moved into Assisted Living
September 2017 - Had a cognitive issue that required him to be "in respite" on the rehab side of things. It was meant as a temporary holding space until the memory care unit opened up.
Early October 2017 - Got pneumonia
Mid to Late October 2017- His kidneys failed and he ended up with a "classic" catheter and 50% kidney function; and was placed formally in the nursing home.
Thanksgiving - 2017 - The "classic" catheter was changed to a permanent supra-pubic
December 2017 - Things were okay...
January 2018 - I started noticing him dropping things and not really with it.
February 2018 - I was helping him with a special treat and at one point he could not tell that he was not holding it and was chewing his own finger; more dropping issues;
Early March 2018 - We started him with the in-house doctor as it was too hard to get him out; She recommended that it may be time for hospice.
March 11, 2018 - Hospice paperwork signed
March 14, 2018 - He was gone
So now I have to relearn how to live my life. I put so much on hold while taking care of him and being so involved even after moving to AL. It's only been 4 months, sometimes it feels like yesterday. Other times, it's easier to bear. As much I know saying something can create the situation, this first year is going to kinda suck. I've been to my therapist and we talked about the fact of his passing and realizing that I'm now grieving mom finally too. Dad moved in with me in Sept of 2013; Mom had just passed Feb 2013; His strokes all happened in Jan 2014. I never had a chance to properly grieve for her. Now I'm reliving her passing and coping with Dad's passing also.
So that's it in a nutshell. I had wonderful friends throughout this that helped and are still helping me. I'm still struggling from time to time, but it will get easier.
Dad and I have had our moments over the past few months.
Today started an interesting thing. He seemed confused as to why the "buzzer/speaker" (controlled entry) moved on the wall. He was not sure of the address, he had to clarify the apt number. He said that today was the first time he'd been in the bathroom... feeling concerned... Sent him to his "Daddy Daycare", then called and gave them a heads up that Dad seemed a little confused, but I could not tell if it was because he chose not to shower or if something is wrong.
I got sick and was going to self medicate, Dad suggest that Mom bring something home. (Think he was confusing my aunt (Mom's sister) who had just been up for Thanksgiving.) Then he suggested my sister help. She's in Illinois.
Wanted to buy a Christmas present for HIS mom. She's been dead for 20+ years.
Got lost at a friends house, trying to find the bathroom;
Got confused as to whose urn is in the apt. (My mom/his wife.)
Got confused where we were sleeping/staying (personal home / vs hotel with sister)
Sent much of this to his PCP, and Dad is on the short list to watch for dementia based upon his history...
Dad talked with Brenda last night and said everything seemed fine, I concurred when I chatted with her and now he's making a liar out of us both.
It's been an odd few weeks since the last entry. I've been keeping a log and sharing with my sister so she's kept in the loop as well.
10-7-14 - After work: While walking the lake, Dad asked about how hanging works. I asked how that idea came up and commented about Nuremberg. I asked if there was trivia question at day center that started that, he said yes, but I’m not really sure. He could not be specifc. We explored the conversation a bit and I asked him directly if he was feeling suicidal. He said no, but I’ll keep watching.
10-7-14 - I asked him if he was still comfortable with how our life is a the moment, and he said yes. I think at this point he commented that he was not sure why he’s “sticking around”. (I can’t remember the exact phrasing/context, but I think there was something like that.)
I talked with a co-worker (RN background) who was the "instigator" of having me get Dad to the hospital and shared this experience with her. I am/was concerned that here was something else to fret over. She's thinking that since the comments are general and not looking for specific, that my "gentle" questions were okay and to relax.
Overall, I think he's bit depressed. Which is not that much of a surprise, considering he watched his wife pass away (Feb 2013), moved to another state; away from all the familiar (Sept 2013), then started having health issues (Jan 2014) and then losing his independence to some degree. I won't let him drive anymore. It's just not safe.
I feel like he's "here and present", but he'd be okay to just fade away as well. He's a very hard man to read. Even if I ask him, like I just did, "What are you thinking?" His answer is nothing, I'm fine.
He's said that he won't do anything to harm himself, and I do believe that. His own father committed suicide, and that was really hard on him emotionally. I'm fairly certain that he won't put me or my sister in that position.
Dad and I got out on Saturday and took a train ride to see the colors. According to him, he enjoyed the day and we just had nice afternoon.
The positive thing, is that he took the stairs by two on Saturday. Skipping a stair. He has not done that since the TIAs/Strokes started in January and he did it again on Sunday, after we went out for lunch.
I know I can't plan for him to be exactly better, but the fact that he can do that again, I call that a plus.
Okay...so well, it's been a few months since the first entry....
We managed through the tail of March and just into April, then I fell apart. I had tried to do the work at home thing, since Dad would not need me sitting on him every moment. Two weeks before Easter, I ended up taking 2 weeks off of work, thankfully, FMLA was still available and I still had vacation.
We got him settled at a very nice Adult Day Center, or "Daddy Day Care" as he calls it. Walker Methodist in Minneapolis. They have excursions and they challenge him. The other day center relied on bingo, dice too much for Dad. As I tell people, his intelligence is still there, it's how he uses it to plan is all kitty-wumpus. He goes three days a week and uses the Metro Mobility to get there.
He had to learn by rote which door to go in, to get to our apt, but he's got it. The first time he got a little confused, thankfully the apt caretaker got him to the right door and I made a cue card for him to use.
Directionally he's challenged. He looks down all the time and does not recognize how something has changed path. I've noticed that he walks a half step behind me, and follows me. I told him that if starts calling me "Lassie" or "Rin Tin Tin", there was going to be a discussion.
According to the neuro-opthalmalogist, Dad's driving days are over. His vision is 90 degrees, for driving in MN it has to be at least 100. I'll be getting rid of his car soon.
At one of the last appts with the lead doctor that manages his therapy, I was seriously peeved. The doctor commented that he's seen vision improve. Which Dad took to mean, I might get to drive again. I shook my head no at the doc and he ignored me and continued the comment. (I had to tell myself that jail is career-limiting move.)
He had a check in for the roto-rooter and that came back beautifully. Everything looks good and there's no change on the right (still about 20% blocked, same as before.)
I'll be having him try out an Assisted Living in November. I need a break, longer than a night.
I spent some time online tonight with the Caregiver's Chat and I realized that Dad and I got incredibly lucky. He can stil walk, talk, get dressed by himself, take showers by himself and do other ADLs. He's not allowed to use the stove/oven, but he can use the toaster and microwave.
I feel grateful that we got that lucky, but guilty that I'm complaining. I suspect that other caregivers wish that the journey they are on would be different/better/easier.
He's made a couple dressing mistakes, missed zipping and buttoning jeans, but managed the buckle. Occaisionaly he still gets his head through his sleeve on shirts.
Time to call it a night. Maybe I'll be able to keep this up better. I'll have to put it on my calendar, like I did the chat.
First Entry - Getting the background in
January 4th - Dad complained of feeling clumsy. Foot not moving where he wanted it to go. Hand not moving right either.
January 6th - Mentioned the issues to a co-worker and she suggested TIAs. I called my doctor's office, nurse line triage and she said get him in asap. Called my sister and she agreed. Get Dad in asap. Her boyfriend also agreed. He saw this with his mom. TIAs are a "warning shot across the bow".
Convinced Dad to go to hospital, I chose Abbott Northwestern due to the Heart Hospital they have and his own history. (Quintuple bypass in August 2011, and stent in August 2012.)
MRIs definentely showed stroke on the left side. CT scans showed blocked left carotid artery. 50% Dad's right side was affected, hand drifted and leg step sideways when walking.
MRIs also showed evidence of right stroke, not as severe, right carotid not blocked.
Plans were made for home eval with PT/OT to ensure I had the house as safe as possible.
Had a carousel of doctors, neurologists and vampires (blood draws) doing a round robin of testing. We had constant questions of does Dad have A-fib? Not as far as we know.
Dad ended up having a tube down his throat to see how his heart was working from the inside. Considering he is a 75 year old man, it's working really well. No issues to be seen outside the heart.
Got told that he would have to be on Coumadin/Warfarin. Which caused a certain amout of hissy cat for our family. (Family legend/rumour has it that his mom had two docs that did not communicate about her dosage. She took too much and started bleeding internally. It caused enough brain damage that she was placed in a nursing home and she died there about 6-9 months later.)
Dad was discharged on January 9th with a heart monitor to see if it could catch whether he was going into A-fib and a plan for nurses to come by and check on him. His driving was put on hold.
January 16th - Dad and I with a friend of mine were having dinner. I called Dad to the table to get dinner. Next thing I know he's taking a header for the table. Tried to catch himself with his right hand and that was not working again either. He's pitching towards the left and my friend caught him. We eventually switched places and got a chair under Dad. 911 is called and Dad is being taken to the hospital again.
More MRIs are done and now it's revealed that his carotid is more like 80% blocked. His left was out of whack, but recovered nicely. His right was set back a bit, but still workable. His heart is conveinentely in A-fib which nicely proves that theory. We have a date set for a carotid endarterectomy (roto rooter) for January 29th. The nuerologist would rather have it done sooner rather than later, but the thought is to let Dad's brain recover a bit and then go in.
The following week Dad and I go walking at a local mall, to get exercise and get out of the house a bit. He's not supposed to leave the house without someone with him, falling risk and plus it's too bloody cold a times. He tries to walk through the storefront. (Some of the mall storefronts have supports, like pillars, just outside and you can walk between them and the door of store.) He missed the fact that there is a window there and clocks his knee on the window. The next day I call the neurologist and ask if this is normal and I'm told that it is, the strokes may have affected his perception and it's something that will be relearned.
January 24th - Dad and I drive to MKE to spend time with my sister and her kids. Dad keeps a promise to his grand-daughter to go to a science lecture. He's confused a bit with directions and we end up relying on Ehlixz to get us to the U of WI. We take the kids back to their Dad and head back to the rental apt. Dad and I stop to get dinner and then go home to meet up with Auntie Mari (Mom's sister). Dad starts unpacking the meds and then I realize that he's trying to open the sharps container. I ask him what he's doing and he tells me that he's unpacking dinner. The next day we spend some time with my sister. We have lunch out and he asks us constantly where his coat is. We go back to the rental apt and watch a movie or at least, Dad listens and my sister and I go and talk about what's happening. I take Brenda home, come back and get Dad to bed. The next morning, I watch Dad get lost and not able to find the bathroom. We get things sorted out and we head to lunch for Brenda's birthday. Dad's is not firing on all cylinders. He tries to eat the paper from the muffin. Dad and I head out for MSP. He unlocks the seatbelt multiple times and I have to grab it and put it back in place. He acts as if he's going to open the door. (Thank heavens I was driving a rental car and not his or mine.) Finally he's able to tell me that he needs to use the restroom. I stop at a truck stop and get him towards the mens room. I glance in and realize that he has not made it to a stall and is about to drop trou and take a leak against the bricks. I move in quickly to push him into a stall. He eventually comes out but is trying to button his jeans with his coat snaps. We get home and I call the nurse line of the home care that has been coming in. The nurse tells me that I need to get Dad to the hospital asap. I then spend about 45 mins getting him back into jeans and to the hospital. In the mean time he's talking about sifters and not making sense. The docs get him settled and admitted. They are just going to keep him until his surgery on the 29th. I ask if this is something I should have recognized and seen to do something about it sooner. I'm told that I can't take responsibilty for this. Even if he had needed to go to the hospital in MKE, there would not have been anything to be done. I was giving him Lovenox shots to thin his blood to bridge to the surgery. He would not have been eligble for the emergency shot.
January 29th - Dad has his surgery. He had glitch coming out of of the procedure. His right side was not working. We waited a little longer and then we had good news. The surgeon, commented that he was much happier with this situation, but reserved the right to get unhappy if something changed. I was challenged by the fact that he did not know which daughter I was. He was asked what my birthday was, and he gave my sisters. Eventually that got solved out and my identity was established.
February 4th - Dad gets moved to Sister Kenny Rehab. A very intense rehab attached to his hospital. He consistently thinks he's in MKE. He is convinced that he's right by the apt where he lived for 10+ years with my mom. He has 6 days of rehab with ~6 hours a day of therapy.
Dad is discharged to home on February 16th. He needs someone to be with him for 24 hours a day 7 days a week for the next 30 days. I apply for FMLA and it gets approved, I also yell for help and I get a couple volunteers.
Over the next/past 30 days, we've had some ups and downs. He still gets confused with where he is, especially when we're leaving rehab. Otherwise he seems to be doing well. I need to be with him if he's taking a shower. (Thank heavens I'm not body shy.) He can zap something in the microwave, he can make a peanut butter and jelly sandwich. He can go to the bathroom on his own. He can get dressed on his own, there are occaisional moment where clothing get's turned around. Head through the sleeve or twisting a coat around as it's being put on.
We're still challenged by his vision. The plan at one point was to get his eyes checked and see if he could get a cataract surgery. He's got amblyopia on the left. He asked about Lasik and they would not do it because he did not have a "back-up eye". His left quadrant seems to be not functioning well. But we'll have to let the neuro-opthalmalogist look at it. He can read some. He made a obvious connection today when we when grocery shopping. He likes the Suddenly Salads. He wanted to go down the pasta aisle since they are pastas. It was a good thought, but those are found in the box dinner aisle. But I was happy he made the connection and tried it.
One of the challenges is Dad's perfectionist streak. He gets very frustrated when he does something wrong. That is part of his upbringing. His dad was not a nice man. I'm sure part of it is struggle from the stroke, but part of it is his upbringing. If he drops the remote on the floor as he was aiming to put it down on the table, I hear a "d*mn stup*d" or "clumsy idi*t".
That's the skinny up until today. We'll see what the next few days bring. Next time I'll talk about the Adult Day Services.