Phone Number Correction

503-953-2777. This would be the correct phone number. Sorry. He is starting his long doses of antibiotic to deal with his lung issue. Hopefully this will solve his cough and fatigue issues.

At Marquis at Wilsonville

Dad is now settled in at Marquis at Wilsonville. He is in a studio apartment enjoying his own space and furniture. He can finally control his own TV. The address is 30900 SW Parkway, Wilsonville OR 97070. His phone number is 503-952-2777.
Dad asked me to let everyone know that he is still unable to read so sending notes and/or making phone calls is still a challenge. He would like to communicate with everyone. We read his cards to him but he can talk on the phone we, so please feel free to call. He wants to thank everyone for their well wishes.

He continues to receive physical, occupational and speech therapy. He continues to have issues with his lungs but sees the doctor on thursday for another round of medications to resolve the issue.

Speedy Recovery

Dad continues to make great progress. He is walking with a cane and independently managing all of his personal care such as shaving, dressing etc. Although he doesn't mind the young, cute CNA who keeps an eye on him while he showers. He is continuing with Occupational , Physical and Speech therapy. He continues to have some word finding difficulties at times and sometimes needs cues to pull from memories. His biggest challenges continue to be the right visual field cut which causes some depth perception issues and his inability to read. He is starting to identify a few words and is beginning to write short words with a visual model. Not being able to read is his biggest frustration so we will be working on getting him speech to text software so that he can dictate letters to the computer. We will work to get books on tape and other reading software. I also hope to get him set up with video chat so that he can visit with friends and family without having to type or read at this point. He will continue therapy to improve these skills. His room mate is challenging him as he is not friendly and can be rude. Jason and dad joke about the east wind blowing in his rom as apparently there is a lot of gas a blowing from the roommates side of the room. He has of course charmed all the ladies who work there and they will miss him when he leaves.

Speaking of leaving he is no longer in need of skilled nursing. Jason and I have been working on locating an assisted living community for him. He went out with us today to visit two and decided on one. Marquis vintage suites in wilsonville. We will begin moving furniture in this weekend and he will move in on Monday or Tuesday. He is looking forward to his own apartment. It is a studio, so space is small but he gets to eat in the formal dinging room , has access to exercises room, television room, library, and formal loving room areas. The assisted part is that someone will manage his medications and ensure he is taking what he needs, weekly they will do his laundry and clean his apartment, what more could a bachelor want. He will have opportunities to go shopping and out to eat with the other residents regularly. The opportunity to socialize and visit with others will be good for him.

I will update everyone with the address and a phone number when we secure the room number and get him a phone. If you don't know how to video chat I would encourage you to learn how and/or determine what you might need to do this. It is a great way to communicate and to see people that you can't always get out to see.

Keep sending your positive thoughts and energy his way. It is working.

we're back

Wow, didn't realize how long it has been since I posted last. Lots to catch you up on. Dad got settled into Avamere. It was a rough start at first as they didn't do things MY way. For those of you who don't know me that posed a huge problem for them. We did get over that hurdle and have reach some compromises. Fortunately for dad I know the system and I don't take no for an answer.

He started off with a room mate that isn't the most friendly. Add to this that the remote control works both televisions. The televisions are about 6 feet apart so competing volumes are interesting. A short sheet separates the two beds. The phones ring and Dad doesn't know whose phone is ringing. Interesting to watch him be a rule follower. Struggles with asking for things in part because he is trying to follow the rules as he thinks they exist. He also doesn't ask because he can't always find the words to ask for what he wants.

Continuing to have headaches. Doing therapy both physical and occupational with some reluctance. He has befriended one Physical Therapist named Lars. He even got Lars to walk him down the street to the local coffee shop. His charm and sense of humor get him bonuses.

Went to see the GI doctor to talk about the colon mass that he chose not to have surgically removed prior to the stroke. He has let 9 months go by so the GI doctor feels he should wait to recover a few more months. Dad doesn't want surgery so we will do a follow up colonoscopy in a few months to try to determine prognosis with and without surgery to make a treatment decision.

Saw the neurologist yesterday. He was overwhelmingly surprised by dad's progress. All are hopeful that he will soon be ready for an assisted living facility, We were able to get orders for a speech therapist to work with him to help with his aphasia( inability to word find) and reading. His inability to read may also be impacted by his visual field cut so we are also following up with and optometrist to talk about prism lenses or other treatment options. His visual field cut also affects his balance and ability to reach and hold things.

We were able to get both of the cats corralled an taken to Shane's house to foster. It was quite an adventure catching the kitten. Jason and I both were wounded and had a well needed intense laugh at each others attempt to chase and capture the wild one. Both cats are now scheduled to be spayed and neutered and can them visit dad at the center.

Had a brief scare when he was transported by ambulance this week to the ER for shortness of breath. His Oxygen level was at 80%. He had several tests to confirm that it was not his heart or a a blood clot. Treatment with inhaler resolved the problem. Likely it was his COPD causing the problem. We did learn that the facility didn't know that he needed a rescue inhaler and he had one in his drawer that he used prior to the paramedics arriving.

Packing up dad's apartment this week. Seems as dad stays busy healing, Jason and I stay busy with all of the other work to be done to support his healing. Everything is done best with a team.

Will there be the "right" place

With every visit to the "rehab" facility I get more frustrated. It would be really nice if I could get them to do things MY way. I am not sure that this is the right place for him. I wonder, though, if I will be happy with any place charged with caring for my daddy. They have only done OT and PT evaluations in the last 4 days. Therapy has not begun yet. They didn't have orders for speech therapy and no was was following up on that. He has aphasia, what are they waiting for. Apparently for me to tell them to get the order done. They have him in a shared room where the remote control changes both televisions and both phones ring to the same extension. Okay so if you have a confused patient why would you place him in a room where any one would get confused. They have no regular schedule for him so he never knows what is happening next. He can only shower two times a week. He doesn't know what day of the week it is or when he might get to shower next. Maybe a visual schedule would be nice!!!! Okay so aren't these people trained to work with patients who have cognitive difficulties? The contact people aren't responding to my emails. There isn't one contact person to speak to. Talk to the therapist about schedule, talk to the nurse about orders, talk to the MA about medications. They don't make following his care very easy for the family. Yesterday he stayed in bed all day. He was still in his pajamas when I arrived at 10:30. He was free to do what ever he wanted which was lie in bed. He won't get better that way. He could have done that at home!!! When I asked about his schedule for the day they said he was free to participate in the activities happening around the facility. I asked if he knew what the activities were, and they said all he had to do was ask an aid. Okay do they remember that he has aphasia, he gets confused, his memory is not yet recovered. Trust that I will be looking into other facilities. When we moved from the hospital the questions were about insurance, space etc. I now have a new list of questions regarding quality of services.

Rehab here we come!!

It is official, Dad is in a rehab facility. This comes after much hoop jumping and bureaucracy. The center first rejected him because they thought he might be a safety issue with staff since he has gotten mad at a therapist. Let me just say I was pissed at the therapist too. All of the nurses loved him. His charm and sense of humor are still in tact. Jay talked with staff and cleared up all concerns. He was settled in when we left but was still a little scared of the new surroundings in his confused state of mind. He understands where he is and that he needs to work with the therapists to get better. I am certain that it is unsettling to be in a new place when you are already confused at times. His new phone number is 503-601-8012. He is at Avamere Rehab of Beaverton. The facility's main number is 503-646-7164. The center has activities in the evening that he can participate in as can visitors. So if your in the mood for a sing a long or a little bingo feel free to join him. Oh, but wait given his response to the idea of bingo or a sing a long he likely would rather have you join him for a game on the television:) He continues to have clearer moments but he also is clearer that he is confused at times and struggles to find the right words. His vision continues to give him some challenges as it alters his depth perception so changes in the floor colors can stumble him up. Reaching for things or identifying where to sign a document can pose a challenge as well. He is on a course of slow and steady.

The next step...

Pops was released from the hospital today and moved into Beaverton Rehab. He is scared and not thrilled to be there but knows it is the best thing. He shares a room and his roommate could be a "interesting" gentleman. They will probably be friends by morning. That is if dad doesn't change the channel on roommates tv too many times on accident.

Now the hard work begins though. He will have lots of different therapy to do. Hopefully he will work hard and respond well. He knows his future depends on the work he puts in. He seems ready and willing. Only time will tell but we hope for the best. I am very proud of him for being as strong as he has been.

Rehab

Working with aging and Disability services to get medicaid in addition to his medicare so that he can have his medical expenses covered while he is in rehab. First he will go to a skilled nursing facility until he no longer needs continual speech, occupational and physical therapies. Then he will either go to an intermediate care facility or to an assisted living facility. Several things influence that decision. There is of course dads opinion. He is his own guardian so if he decides not to participate in therapy he will be released. If he chooses not to stay in an intermediate care or assisted living facility he can leave when ever he choose. We are hopeful that he will consider our recommendations for what will be best for him under his current circumstances.

Skilled Nursing: medical staff available, shared room, regular therapy for up to 4 hours per day in the therapy rooms. Learning to navigate stairs, write his name, learning to cook, etc. All of the skills that seem to challenge him right now as his memory is impacted from the bleed.

Intermediate Care: Intermittent therapy, continued medical support i.e, insulin injections if the need continues, seizure meds and monitoring if that continues to be of concern.

Assisted Living: Studio Apartment, Main dining hall, activities. Limited or no monitoring of health or mental needs. If his memory still has dangerous gaps this may not work.
We still have lots of recovery time to go.

He continues to make improvements every day, He remembers more and his moments of clarity continue to get longer and stronger.

While in rehab he will see a dentist and follow up on a mass in his colon that he chose not to treat prior to the stroke.


Lots of decisions and consulations everyday. The decision making becomes exhausting at times.

I again encourage everyone to put plans in place to assist your families with these kinds of decisions if the need ever arises. Where are you important documents, would someone know where to find them? Do you have all the legal documents in place that allows someone to handle you fincances or make decisions for you? Do you have an advance directive expresing your wishes in a medical situation? Have you written down where you would like to be if you are unable to care for yourself for a period of time? Dealing with ilnness is stressful enough. Be sure to prepare your affairs for the people who will be charged with assisting you if the need arises.

Watching football

Dad is getting better. We we watched the Colts/Jets. Dad still has a lot of confusion but when I came in he gave me a high five and Hey Big Guy. Got him to take a shower, which has been a battle. Afterword said he felt much better then fell right to sleep. Fatigue is going to be an issue going forward. Just talking can be tiring for him. He may be out of the hospital as early as tomorrow. Wow what a whirlwind this has been!

No more sitter

Dad does not require a sitter any more. He does have a bed alarm on so that the nurses are alerted to when he is up and moving. He still will not shower. I didn't realize what a modest man he was. He wants the bathroom door closed and gets mad when you won't close it all the way. We are still watching to ensure he doesn't fall while he gets stronger. He will not shower unless he can be left alone which we can't quite do yet. Will try a male CNA today to see if that helps. Slept most of the morning today. Today he answered that it was January 1964. He said earlier that he is living in his memories. He is continuing to make connections with all of his memories as his brain continues to heal. Every day his moments of clarity are clearer and last longer. What it must be like for him to be reliving all of his memories the way that he is. Especially when we don't all play along. The plan is to move him to a skilled nursing facility on Monday. There he will get therapy for up to 4 hours per day. The place we are looking at also has an assisted living section that he could move into after he no longer requires rehabilitation, if he still needs some support. They also allow visits from pets so we can take Bootsy (his cat)in to visit him. He is very happy about this idea. I am looking forward to regular therapy to see more recovery. He is spending much, if not all of his day in bed now and that isn't good for his body or his mind. We meet with case manger on Monday and I will update you with the name of facility then.

Friday

Yesterday was a busy day of decision making and legal affairs. Met with attorneys to attempt to get Dad's financial and medical affairs in order. Things should go smoother now that we have established power of attorney, advanced directive and release of information. If those of you following dad have not gottten all of these things prepared, I encourage you to do so so. God forbid that anything happen to anyone but as we know we will all be faced with aging and likely illness in our life times. Jason and I will be having all of these documents prepared for ourselves to make things easier for our families in the future.

Dad gave the therapists a difficult time, He refused to work with them and even shook his fist at them. He says they pissed him off. He is able to get himself around his room, eat pretty indipendently now and talk on the telephone. He knows where he his, knows the month and year and knows he will not be going back to his house but to a skilled nursing facility to get stronger.

Take me home

Dad began his day by asking Jay to take hime home. In his clear moments today he was alert, humerous and knew where he was and what was happening. His clearer moments are clearer every day. Unfortunately we continue to have moments of confusion, moments of memory loss and moments of frustration. We believe this will be our course for awhile. In his clarity he understands that he will need to go to a skilled nursing facility to get well. In his confusion he wants to now why we won't take hime home. In his clarity he talks about living in his memories, having crazy dreams and being sad. In his confusion he uses a straw for a fork and the sink for the toilet. In his clarity he lets people help him to get around, asks to watch a game and tells us when he is cold. In his confusion, he argues if helped to do it himself, refuses to eat and puts his tissue in his sock for safe keeping because he has no pockets. I can only image what must be going on in his head. We continue to enjoy and clebrate every moment of clarity, helping him to understand that we are in this together.

Interesting Day

It can be exciting and discouraging as we move through this phase of recovery. Dad is his chipper self, joking and answering questions with be good accuracy one minute and the next time you check in with him he is confused again and struggling to find his words. Doctors say he is medically ready to move to an assisted nursing facility. He could remain in such a facility for as much as a year because recovery from this sort of injury is slow. Thoughts of managing finances, where he will go next when he leaves the hospital, how to take care of the cat etc... are all the challenges on our minds. We are happy to be past the emergent status of will he make it through the day to now what. What needs to be done, who do we call, how to we make all the right decisions to ensure he has the best care and the greatest opportunity for a good recovery. How do we balance being hopeful for a great recovery with cautious optimism for his body is weak and he is still ill. He still risks further illness. For now we will stay busy with the work at hand and relish the moments when is is at his clearest. We continue to remind him as often as we can that he is loved. Even if he doesn't remember the words. He will feel it in his heart.

Next phase

Well Dad is finally out of ICU. Eleven days, wow. He is in a private room with a great view. OHSU, floor 10K room 6. He currently still needs a sitter so he is sharing one with neighbor. Unfortunately he is more confused today. He is struggling to find words and says jumble words and words that are off topic. This is making it harder for us to communicate with him to help him understand what is happening and for him to tell us what he needs or wants. Hopefully this is a temporary state of healing. He is not restrained when there is someone in the room but needs lots of prompts to remain in bed or in his chair. Lots of "WHY". Lots of talk about insurance, fire insurance, burn insurance and some jumbled words we can't get. Maybe he is thinking about when he was working? Direct room number is 503-418-8306. If we are in the room we will answer for him. Continue to send positive energy and thoughts his way for good healing.

Time to rest

Dad had a great day. As the day wears on dad wears out. He is less responsive and less aware of what's around him. Fatigue is his enemy right now. As we tried to tell him goodnight the nurse wanted to ask her battery of questions since his confusion had increased. When asked his name he said, with an accent, "I'm jose Yemenez".

woo hoo

He has most of the tubes out and restraints removed. He has been upgraded to having a regular diet . He currently has a sitter so that he follows the rules now that he is unrestrained. He has discharge orders to be moved into his own room on a regular floor. Currently they son't have any rooms open. As soon as one opens up they will move him. Therapists will begin working with him in the morning, getting him up and walking. He is thrilled to be drinking water. Can hold the cup on his own better with his left than his right. His visual field on the right is impaired. He can see everything from midline to the left. Being right handed is posing a challenge with depth perception. Joking with us. Asking about what happened. Has some trouble with word finding. Has some trouble with short term memory. We are very happy with his progress. Lots of smiles.

The nurses are falling in love

Dad's charming side is showing to all of the nurses. He giggles with them and gives them great smiles. If he continues at this rate with no more bumps he could move to a regular room in the next day or two. Still have lots to improve but we may be getting close to passing the hardest spot. He was singing and dancing his toes to an infomercial about old music. Very Cute. Were getting him a radio to listen to. He wants to get out of bed and the restraints frustrate him. He was trying to get out of the chair they placed him in and the only thing that worked was bribery. He would settle if I gave him an ice chip. When I told him to stop fighting with me he said,"I won't fight with you if I get my way." Jason sneaks to give him more ice chips when the nurses aren't looking. One won't hurt will it? How can you say no to can I have more water please. It has been a good day. Much to celebrate.

It's a new Day

Dad got some good sleep last night. He is more responsive today answering questions and following commands on both sides of his body. He wants to go fishing in a boat when he gets out of here. He said it is 1974, the years are changing for him, but that is good he is connecting memories. He pulled his feeding tube out. They tried an oral feed with water and applesauce. He can handle thickened liquids but fatigues quickly. They need to reinsert the feeding tube in his nose becasue he can't get enough nutrients orally until he is stronger. He giggled when nurse tayna told him he was getting pink in his cheeks, both sets. It's a new day!

My unbelievably strong sister

Has been here at the hospital since Wednesday sleeping in a couch that no one should ever have to sleep on. If things go better for our Dad we will have a great debt to pay to her for all her hard work and persistence. I love her very much and am so proud to be her brother. Without her I am pretty sure I would be in a cell with padded walls. Thanks Sis!

Sleeping Finally

Dad is finally sleeping after being restless and no sleeping for the last two days. His stubborness won out and they finally let him lay on his right side curled up the way he wanted. Hopeful that when he wakes his body and mind will be more rested and mored healed. His lungs are still marginal but he continues to cough to clear them. Hope he's sweetly dreaming.

exhausted

It's been a long 24 hours for Dad. They have decreased the sedation to monitor his mental status and to decease the effect on his lungs. He is uncomfortable in the bed, slides down, shifts to the right, can't get head settled. He has not slept. He starts to doze and startles awake and tries to shift position again. His muscles are fatigued from all of the work. His face is showing his exhaustion. Lungs now are worse. No signs of infection but decreased breathe sounds and very wet required that he be up in a chair. That seems to be even less comfortable for him. He wants to rub his mustache and scratch the itchy scab on his head but those damn restraints won't let him. The nurse on shift makes a huge difference. Yesterday I was allowed to stay with him and calm him. I could shift his position for him, get him pillows and blankets, chapstick, etc. This night nurse, cute as she can be, but was a pain in my *%#. I could hardly touch him, no blankets, too many pillows don't move his arms. Grateful for shift change. Hoping that the doctors will choose a medication that will help him sleep today. Not much response from him yesterday afternon or last night. Got some head nods this morning and he said "_______home" I am not sure what the first word was. He repeated it but I still didn't get it. Nurse said he was non responsive with her all night. Took a couple minutes for me to get a response. Even he didn't like her. Hoping today will bring a positve shift in his recovery.

The journey continues

Well, today has been up and down. We got the breathing tube out, Success! He started struggling, lungs got wet, considered reintubating, moment of panic. Medications cleared lungs for the moment no need to intubate now, Success! Difficult to arouse, not very responsive, blood pressure up, few steps backward. Very agitated, hurting the nurse, extra restraints, few more steps backward. Calms with persuasion from Jay and Teri, kisses nurse's hand, success! Needs Gastric tube placed in nose for medications, another set back. Sleeping quietly, SUCCESS!

Another bump in the road

Dad started struggling with breathing again. Lungs very wet. Set up to reintubate. Gave him some meds to help with swelling and release fluids. So far the meds are helping so hopefully we won't have to go backwards. His cheif complaint is his throat and every day he has that tube in increases chances of infection and pneumonia as well as discomfort that makes him agitated. He is tring to get out of bed so the have a vest on to keep him tied into the bed,. Finally got a sip of water, he said, "oh yeah" and finally settled back to sleep. Everyone send all you energy to him right now so that he can keep those lungs clear and not go backwards to the ventalator.

New chapter begins

Well the next step in his recovery has begun. The breathing tubes is out and all of the EEG leads are off. He is talking. His throat hurts and his lips are dry but not allowed water yet. He recognized Jason and asked him to help him and take him home. Kept repeating "Help me son". Hard for Jason but he held up well. Refused nedbulizer treatment for his asthma so he had to be restrained again. Knows his name, is not sure where he is and thinks it is 1999. Was that a good year? Must have been. Rob visited, didn't recognize at first, must have been the long hair. When I told him who he was he asked how is mom was. Rob told him she would be here is she could and Dad said, I know she would. So he is responding in complete sentences appropriately, but some memories have holes. Hope to get a better sense of his memory when his throat settles. Speech seems to be recovering well and that is a great beginning.

Good Morning

Friday 1/15 - Great morning so far. Ventilator turned off, breathing well on his own. Should remove breathing tube in the next hour. No signs of obvious seizures through the night but Dr. still needs to read EEG. Color is better. Continues to be responsive and calm. After the breathing tube comes out we start a new chapter of recovery and we are ready!

He's coming back

Thursday PM- Great evening tonight. More alert, answering yes/no questions. Asked for Jason and mouthed "I love you" to him. We may be over a large hurdle. Hopeful to have breathing tube out in eary morning. Long road still, but tonight is a victory. Celebrate!!

The beginning

My family started this blog to update everyone on Dad's status.

Last Saturday he was admitted to OHSU with a possible stroke or brain tumor. He was intubated and placed on a ventilator. He was having seizures and was vomiting so the ventilator was used to protect his airway.

Sunday-MRI and CT completed along with a laundry list of blood tests. MRI showed a large bleed in his brain in the occipital and parietal lobes. There was some swelling around the pool of blood indicating the likelihood of a tumor that had bled. Remained on ventilator pending surgery to remove blood and any possible tumor. If it is a tumor it is likely a glioma which is a rapidly growing invasive tumor. Surgery postponed until Monday due to other more critical patients.

Monday - Surgery lasted about 2 hours and went well. No tumor, pathology looks good. It appears to be a hemorrhagic stroke. That means a leaking vessel that bled into his brain. All of the blood was evacuated. They did not have to shave what little hair he has left. We are happy about that. Little things matter right now. Mid after noon they extubated him. He is responding well with eye gaze, saying or nodding yes to questions. He is moving both arms and both legs. Still think he will not have vision on his right side due to the location of the bleed. Speech centers may be effected but so far responses indicate this may turn out better then we think. Wet his mouth with a wet swab and he sucked the liquid as fast as he could. Wasn't suppose to do that. He wanted more so we cheated and gave him another How can you say no?
Jason told him to be strong and get ready for football season to root on those seahawks he smiled and laughed. We told him we would get through this together he responded "do this together" He is coming around we are pleased. This is a good day.

Tuesday- Early report he had a difficult night, very agitated. Pulled out Arterial line tried very hard to pull out breathing tube and catheter, even with restraints. Nurse told him to relax which he responded in true form, "Screw relaxing". Several nurses worked to position him and adjust restraints. Male nurse said he was "strong like bull." Had to reintubate him due to increased agitation increasing blood pressure and pulse. Huge set back. Began biting on tube requiring a mouth block which he doesn't like and is trying to spit out. Bit his tongue so lots of continued bleeding as a result. Not a good day today.

Wednesday- Seems more calm today. Responds to Teri to calm down and relax. Gets agitated when anything is being done to him. Crying at times when talking to him about where he is. Seems to understand where he is and will follow commands from Teri. Changed lots of tubing. Fever a bit higher today. All in all not a bad day.

Thursday- Rough morning. Less alert may be having seizures. Hooked up to EEG for 24 hours to monitor brain waves. Lots of moving for different procedures. Took out the central line. Took out the arterial line. Trying to minimize any likely source of infection to aide with fever. Will put in a PIC line instead for now. Passed spontaneous breathing test so can breath on his own but when agitated still slows so lowered ventilator for today with hopes to extubate tomorrow. He will be so much better when we can get that nasty tube out of his throat.Continuing to tube feed him for nutrition.