out of the hospital, but…

My dad spent 2 nights at Riverside in Kankakee.

They tried to get his sugar level stabilized (high 200’s) and get his infection under control. Once they identified the exact type of UTI (who knew there were variants) they were able to find the most effective treatment – we hope.

When my dad returned to the VA Home, they had moved all his belongings, pictures, etc. into a room across the hall that was private. Used normally for isolation or other residents who can pay more money to have such privacy.

When visiting on Friday, my dad seemed to somewhat enjoy his new surroundings – yet we’ve learned in the past couple of years, that a change of surroundings can reek a little havoc with elderly folks, and cause more distress and confusion. So, my dad has a new view (for now) and we were sure to move his bird feeder and bird bath outside his new window. The only item we re-hung was his birdsong clock from home, that we made sure he had with.

We truly don’t know how long he will be in this room, and if he will return to his semi-private room with Steve, or with someone else. The man they moved out to allow room for my dad, was relocated to be Steve’s roommate. But that lasted one night, as they moved that man (Ed) somewhere else. Steve may enjoy the privacy and quiet (of one TV) or maybe he’ll get lonely. Can’t yet tell that with my dad, because he seems to go back/forth with his feelings on this. It is possible, that when my dad is moved out of this temporary isolation (does not mean he cannot have visitors) that my dad could be moved in with someone else entirely. That could be an adjustment – for all of us.

While this infection may be getting under control, this is a setback for my dad. He had been doing so well for several weeks or more, that it was almost surreal – like the calm before the storm. He does continue to have a bit of confusion when talking or even difficulty talking or finding words since all this started last Monday. We are headed there shortly and hope that we find him in good spirits and improving on all levels. Also, I hope he understands that due to work, and my own upcoming medical appointments over these next two weeks, that I won’t be able to come every day like this past week, or even every other day. He does seem to demand my presence quite often.And the continued (catholic-instilled) guilt is a hard thing to ignore.

 

 

Back in the hospital

The past two days have been concerning for my dad. While our visit with him on Sunday afternoon was a good one, he took a turn during the night.

Monday morning the nurse at the VA Home called to say they had a very difficult time waking him and keeping him awake. His bed was soaked with sweat and he was very confused. His behavior led them to believe he probably has an infection.

So they called an ambulance and I headed straight to the ER at Riverside hospital in Kankakee. He was in their for several hours, having blood cultures, X-rays and multiple other blood tests done. He was quite confused and yet slept nearly the entire time.

And as his sick sense of humor prevails, he shouted – “call the undertaker” in between naps!

After a few hours, a doctor came back to say that he has a UTI (urinary track infection), and as we’ve all become quite aware of, this affects the elderly in such a way as to change their behavior, alertness, etc. So they started an antibiotic (Cipro) there and sent him back to Manteno, with me in the caravan. The nurses got my dad settled in and I went home. Joe was in St. Louis (working) at the time so I stayed in regular touch with him.

Then early yesterday afternoon (Tuesday), I get another call that the same thing was happening and they were concerned he was septic. That scares the hell out of anyone. That is a progressive situation we hope to never see, but the seed had been planted.

Joe had a half-day at work so went to visit my dad in Manteno just as the ambulance was pulling up. So, after several more hours in the ER and in a much smaller space than he was on Monday, they went back and forth citing Sepsis as the culprit here. He was not as terribly sleepy but still confused, and would have a hard time talking or finding words. I noticed at one point he was getting aggravated with Bob looking at his cell phone and he was trying to tell me so, but could not speak. I remember when he was first hospitalized and for quite a few weeks, would refer to our cell phones as calculators. He does not like when we pay too much attention to those.

During the day, his fever was up and down, but had climbed to 101.9, which was concerning. His shaking was still quite bad, they said due to fever. They could not take his temperature normally and had to go about the most uncomfortable way. I heard him yelling out and that was upsetting. Then they inserted some Tylenol hoping it would have a quicker effect. That was at least twice yesterday. Usually, all meds are given to him through his G-Tube, including cough medicine.

Yesterday, a new antibiotic was introduced, one that raised some concerns for me – Rocephin/Ceftriaxone. But almost every med these days has warnings and a reputation for causing further issues. They decided to keep my dad overnight which we all felt better about. That transfer for him, in/out of beds, ambulances, rooms, etc. is very disruptive and uncomfortable for him. Every time he goes over a bump of someone touches his leg, he flinches. He was not very happy. At the same time, he’s been coughing a bit the past couple of days and a lot of phlegm is being produced, which he knows he has to get rid of. Swallowing that could be dangerous for him, due to silent aspiration.

The UTI is pretty bad but has not turned septic. So today, they’ve started a 3rd one (replacement) called Invanz. All these are causing some stomach distress but it seems they are getting that under control.

My brother just arrived to see my dad moments ago, and sent me a photo. He looked alert and in good spirits. I will go there in a while and hope to see the same improvement.

Thanks for letting me interrupt your days with my messages and I am grateful for your concern and prayers.

Donna

 

 

Time flies

I’ve neglected to update caring and interested family and friends on what’s been going on the past few months. Didn’t realize until this week so much time had passed.

In brief, my dad is doing better than ever expected. There truly are no signs of a dementia, although sometimes early morning he’s a bit confused. He’s gained weight, kidney and other functions have stabilized. However, he’ll never be able to eat/drink again.

About a month ago, his sugar had gone really low – dangerously low. He knows it and sometimes has to convince the nurses that it is so low, and he’s always right. After this particular incident, a nurse came to put apple juice immediately in his feeding tube. In the past, my dad would be able to drink a glass of orange juice or something to get the level up right away. These days of course, he has no control over what goes into his body.

She then gave him a Jolly Rancher. He was so excited. He’s had nothing to taste at all in more than a year. Sure, maybe thickened water during video swallow tests. And sometimes he’s grateful he doesn’t have to eat the food at the VA home. But she told him to suck on the candy piece very slowly and do not bite it or ever swallow any part of it. He loved it. It was grape. Said it was the best thing he’s ever had! But as he talked while sucking, he eventually broke it up and swallowed a small piece. We let the nurse know but so far, he’s survived the Jolly Rancher.

I am going to bring a couple of suckers to keep on hand, in case this sugar issue happens again. At least he can taste it from a stick and less chance of breaking off.

The foot specialist has released my dad. What this means is that amputation is off the table / out of his vocabulary! His wound is still sizeable but nothing like it was before.  It is healing due to the great wound care and attention by the staff there.

He’s been in very good spirits in recent weeks, but then the past couple of days – a bit down again. He’s lonely, he’s bored, he’s inpatient.

I will share some recent photos here next time I post and some other notables.

Donna

some good news to start

A visit to the foot doctor with my dad on Friday – a good one. We waited a full 5 weeks for this appointment – and now we can wait another 7 weeks for the next. What looks bad is actually good!

While my dad’s foot looks horrendous to the untrained eye – the ‘hamburger’ texture – the granulation is exactly what they’re looking for. The heel is on its own smaller of course, but so is the wound opening. I take photos each time, for comparison. I use the Selfie feature so I don’t need to look directly at it – and at the same time can show my dad a photo. The wound is still quite large but is definitely healing albeit in a slow manner. While Diabetes is a factor in this slow healing, and lack of certain abilities – my dad’s healing is underway. It may be a seriously long process but we all believe the word amputation can be removed from our collective vocabulary.

Tomorrow – March 14th is my dad’s 84th birthday. He’s survived this horrific event now through 2 birthdays. His internal willpower must be very strong. He has said recently, he knows he’s never going to leave that place (Manteno) and he’ll end of dying there. His roommate repeated the same fate. But on Friday, while we were in the  day room talking with another resident, we felt fortunate, in a way.

We were talking with John, a resident who always has a bit of a smile on his face. He wheeled over (using his feet) to us to start a conversation (much of what is repeated). He also served in the Korean War. He worked as a chef in his life, and he was from the North shore and he’s had 4 knee replacements. John is 84 and explained to me that his last name was Russian after I attempted to guess at everything but. He’s a proud bachelor. He hates being at the VA Home. He told my dad once that he thought of committing suicide just to get out of there. A lady was sitting near him working on a crossword puzzle. I presumed she was a sister or wife. First time I ever noticed a visitor with him.

As it turns out, Karen is hired help, through Home Helpers in Bourbonnais. I am familiar with them through the office they have in my office building in Mokena. My cousin Judy and I met with them a couple of years ago, looking for some help for my Uncle Babe. I was impressed with their training and requirements of continued training. I believe this services is paid for through John’s estate or trust – though he doesn’t realize it. She’s 72 years old. John has no family. Just a cousin on the East coast, older and in a nursing home herself. Karen works through Home Helpers as kind of a companion to John, 2-3 days per week, for a few hours each. She is not responsible for his medical or hygiene needs. Just to show up and be there for him – to read to him, take him for a walk, etc. She affirmed that John would never attempt suicide but that he does mention it just in frustration. I hear the same from so many of the men there – “I’ll never get out of here.”

When my dad talked among us about dying there, Karen shared this: ‘You know, it’s not such a bad place to die. And I’ve seen a lot of places. And people die on the streets, in car accidents, in places they may not be soon found. At least there are watchful eyes here. We’re all going to die and we might as well be somewhere that people know us, care for us, and are seeing to our comfort and our needs.’

Karen is right. My dad agreed. And it was just another instance where I believe my dad recognizes his life is still worth living. He has family. Family who is present. So many have no family. I think about that being the parent of an only child. I think about childless couples and who may not have anyone to look after them in their time of need. I think about the other residents with some family but rarely get visitors. My dad has enough frequent visitors like us, his grandsons, my brother and even nephews and nieces… that sometimes I feel that others seem to look forward to our arrival. Just seeing people from the ‘outside’ gives them a breath of fresh air. This is why I always make the time to briefly chat with someone, or give them a little push down the hall – or just acknowledge their presence. Otherwise, these guys (and women) can feel like they’re just human pin cushions; fed and bedded on a rigid schedule, constantly having vitals and sugar levels checked, their 2 baths/showers per week where most complain as to how rough ‘the black ones’ are when scrubbing them down – so rough, that they’re afraid their tattoos will be erased!

In any case, they all had lives – some accomplished, whether they were bachelors before or widowed since. Now this is their life and they go to bed every night knowing they are exactly where their life will end.

 

some answers I just can’t get

For maybe the 4th time in a row, I’ve found my dad in bed in a hospital gown. For no apparent reason. When the rule of thumb around the VA home is that everyone wears fresh clothes every day – nothing twice in a row, I guess changing into a fresh gown would apply. However, early last week the gown he wore was tissue paper thin. Then the next one was on its way to being tissue paper thin. Then last evening however, long before lights would be out, he was yet in bed in another gown. Didn’t seem to care so much but I do.

I wonder if that means that he’s being left in bed all day and no one is making sure he gets out and about. I wonder if that means he’s too depressed and doesn’t want to get dressed or out of bed. He can’t answer me, nor could the charge nurse I questioned.

My dad is on a set routine as far as getting up. Since he is NPO – he is left in bed until the breakfast rush is over (could be a couple of hours) where CNAs are busy helping with meals, etc. But he is fed 5x per day in order to balance out his intake, sugar and insulin and keep his kidney and calories in check. While he’s looked good in the past couple of weeks, not so good the past couple of visits.

On Sunday afternoon, thankfully Eric was there at the time – a new nurse (to the unit) was just about to give my dad cough medicine, orally. Eric stopped him and reminded him of the NPO. Seriously? So about 10pm that night, I had a talk with this nurse who was very apologetic but used the excuse of not having been on that unit for a long time. Needless to say, I found a new and more obvious way to remind everyone that my dad cannot have anything to eat or drink. Hopefully this one won’t be missed! I even told the charge nurse about this incident and she really wasn’t moved. I said that if he’s going to be given anything by mouth that may cause him to choke to death or get that dreaded aspiration pneumonia – it had better be something good.

NOW ABOVE HIS BED.

 

He says he’s bored to death. I am sure he is. But in part, his own issues with being fickle and having a short attention span, or in thinking something is too menial for him to do.

He didn’t want to get involved in the woodworking shop they have once weekly. He went one time only and felt it was more childlike, crafting to build little birdhouses. So when I checked with the activity director and asked if he could be the one to ‘paint’ these bird houses – she said, she will check with the ‘ladies’ that do it as it is their call! Hmmm.

They are showing a movie later today in the dining room – Red Tails. I know my dad watched that here with us a couple of years ago. I wonder if he will recall it, get bored and just want to leave.

I did learn that another man in a closeby unit is on a feeding tube. This may be an opportunity, if someone there will take charge of it, for him to really connect with another ‘member’ as they truly have something in common. Since those 3 meal periods a day are just another time frame for loneliness and feeling a bit abandoned, maybe there’s a way my dad can show this newer guy around. He does like to give everyone who visits a little tour.

While my dad has a hard time focusing on reading (for the most part his impatience) he does like Reader’s Digest and he’s pilfered a large-print issue from the main area. He keeps telling me he’s reading it but I think the issue (a large one) is getting challenging for him to handle. This Parkinson’s thing affects dexterity, depth perception and more. I brought my tablet along (FINALLY connected to the Internet there) and showed him how my Kindle works (via the tablet). He seemed interested in the ease of reading, screen movements, etc. He was also enjoying some of the videos I saved via Facebook for him to watch with me – little Zoey Bollywood dancing from the Little Couple, and the John Oliver bit segment about Trump. But even with those short clips, 3-4 minutes and 18 minutes long, he puts it down about half way through.

In any case, this weekend the VFW from Midlothian is hosting a Bingo event and I want to make sure he goes. Unfortunately, my dad never was able to attend any of their events when he was still at home. He had just joined last January as he knew he had to start finding an outlet for socializing, etc. at that time.

I wish there was more I could do, without actually working or volunteering at the VA Home. I am hesitant to share too many ideas that come to mind with staffers, as I don’t want to intrude upon their tried and true efforts. But I did contribute something last evening when Chair Yoga was brought up as something they are looking into.

I learned through my mom’s experience in earlier counseling — that when a video tape is popped into a TV and turned on (on a small screen yet) and the facilitator just stands by or leaves the room – that those in the class won’t be motivated by what’s on the screen. In fact, many fall asleep. My mom used to tell me this and she would watch to see who would nod off first.

Then I found this lovely woman – Cecily Hunt, who runs chair yoga classes in Flossmoor. What an incredible difference to have a live, and skilled instructor: to keep one engaged, to watch over to make sure movements are correct and that no one is hurting themselves; to make sure each person can hear the instructor as well as the music; just to be present. Being present is often what matters most.

those milestone dates

They’ve come and gone, those anniversary dates. February 24th & 28th. I wondered how I would get through or handle them. The first holidays without my mom and then of course her last day with us. Last Wednesday during the bit of a blizzard,  I did go to the cemetery to visit my mom’s grave although it was more of a drive by. Everything was covered in stone. But that day was one year since my mom passed away and I had to go no matter what the circumstances. I hope somehow she knows. I do know she would have wanted me to be there and remember her. And no weather condition would have prevented me. Having a ‘place to go’, a ‘place to visit’ is oddly comforting. I now know how my friends feel that have lost loved ones before me – and the solace they may find in such peaceful places.

Then there was yesterday, as February 28th stands out just as much for me. At odd times in odd places I would be overcome with sadness. It was the day my mom was laid to rest here – but also on the same day, my dad was transferred from the hospital to Lexington.  The hospital never thinking he would survive his stay or much more beyond that – encouraging us to consider Hospice care for him. And here we are, he’s still with us one year later.

I wonder what keeps him going. Most people would presume that when two people are so close for so many years, their leaving this earth would be close together. As my dad always use to say – he wants to be buried ‘side-by-each’ and he assumed as well, one could not live long without the other.

My mom’s quality of life had dissipated long before she died. My dad’s quality of life had been seriously impacted by her issues – and in some ways, while he knew she was close to dying, he looked ahead to the days when she would be at peace and rested and no longer haunted by this disease that was never identified until a couple of months before she died. He may have looked forward to a bit less guilt and a bit more freedom, albeit he’d probably be lost and found it hard to live a life without her. And so it goes – he has survived so far, through such horrific issues and has very little quality of life. But his heart must be strong and his mind still in tact. I wonder what he lives for.

February 28th is the date that resonates with me as much as the 2/24; the date to which my dad really began his new way of life – no chance of returning to his home, his car, his freedoms. A life without my mom, without the abilities we all take for granted.