Sunday, December 31, 2006

Seizures, Dilantin and a move in the new year

Well its been over 2 months since a post, and lots of things have happened.

A few major things, is that mom did have a cognitive psych eval and the results are not favorable for her. The Dr. basically stated she will need 24/7 supervision the rest of her days, at least for safety's sake, and doesn't expect her to get ever get much better than she is now. What this means is changes in her life that were inevitable, are now coming faster. While her health is stable, she can no longer be alone and feed or clean her self properly.

The second thing that has occurred, is that mom had a seizure. I guess this is common post stroke victims, but another strike against her. She is now in Dilantin and it really threw her for a loop. She was to tired or un-motivated to get up and do anything, including going to the bathroom, which was messy for a week or so. The Dr. has cut back the dosage and she seems to be getting better again.

Sadly and lastly, the New year brings resolutions and changes. I have decided that this kind of work is to much for one person to do, and I have a found an assisted living place for mom to get the care she needs, allowing her and I to have more than a caregiver relationship. Mom will be moving to a wonderful Adult Care Center in Monroe, where she can have friends and family visit her anytime, 24/7. She will also get rehab as needed, meals, laundry and snacks all inclusive. The facility can only hold 20 folks so mom will get a double room with no roommate at a single price.

This is a hard decision for me, but the support of family and friends is helping me realize she needs more than I can give her, while also letting me move on in life.

I hope the New Year brings you joy as it will for mom and I, both happy and living life as much as we possibly can.

Saturday, October 28, 2006

The start of a new day

Today’s update brings a little more info about mom and info about me.

Mom does seem to be getting better as usual, a little bit more each day. Major breakthroughs occur less and less but I see dramatic improvement in memory of the past, but short term is still shaky. We did an exercise recently of all the dogs we had and at first she said “I don’t know” to every dog name I asked her about. But if I gave her the first two or three letters, she could remember the names. Ask her later what they were, and you would have to repeat the whole process. With grandma out of town and Abbey staying here, mom showed incentive by trying to take her for a walk! I went with them to supervise and it went well.

Funny and ‘obsessive’ habits are still occurring and they seem hard to break. I have to assume most of them are out of boredom. Things like flipping the TV channel every 5 to 30 seconds, checking the mailbox every hour or so, letting the dog in and out every hour (and sometimes the dog is already in the house) and various other benign, but strange habits.

Mom still needs 24/7 care for safety reasons. If no one was here I can only imagine how well she would keep herself clean. While she attempts to shower, it’s not very thorough. She can get herself to the bathroom fine, but her bowel movement cleaning is less than desirable and still wears day timers and depends at night to keep a dry bed. She still sleeps with the bed rails up (she insists on them being down) but I can only imagine her trying to get up and falling in the middle of the night in the dark.

Her every meal is prepared for her, but she insists she has been getting her own meals since the stroke. WRONG! I fear her trying to use the stove, and let alone trying to use the microwave. If no one lived here, I would have to have those items removed and meals delivered. She has no concept on using the microwave and I would worry the gas stove would be the end of her.

She can kind of get dressed but her right arm is still an issue. She has some movement in the arm and hand, but it’s more of a hindrance still. With bathroom issues/accidents I would worry her clothes are not getting washed so some daily laundry tasks must still be done.

She visited her neurologist this week and she said it’s time for a psych evaluation to be done. I am worried this is a good as she is going to get, and some things are going to have to change for the health of the other caregivers in mom’s life.

Now about Mike, the live-in caregiver:

I have come to the conclusion, that while this has been a trying yet rewarding experience in some ways, I cannot do this forever or much longer. My health, my job and my marriage are suffering. My wife and have grown apart (not because of this issue with mom) and our marriage is all but over at this point. I have not slept at my home in over 6 weeks, and trying to work from home one day a week and recent job traveling, is starting to get noticed by my managers. If I do not get myself and my life together, I will not be able to do my mother or myself any good.

Today is my proclamation day, Sunday October 28, 2006. Today I am going to take charge of my life and make changes to it that will benefit not only me, but others. I am going to initially pursue a live-in for mom and as fast as I can. I feel this is the best option for her outside of a nursing home or assisted living. If that cannot be done, then I will start preparing mom to the idea of assisted living. Her Nueropsych evaluation will reveal to me how well I can expect her to get, and what kind of living space she is going to need.

Am I giving up on Mom? No, but I cannot give up on me either. I said I would try this for as long as I could and I would have hated myself if I had not tried to help mom. But I cannot see her getting better to the point just yet where she can be alone. If my marriage is over and I am going to be alone for the time being, then I need to take care of Mike now, so I can take care of mom later.

I want to thank Liz, my wife, for the help she has given over the last 5 months and to Stephanie the Nurse extern that has come in also. Without them, I may not have done this as long as I have, or kept my sanity. To Judy and Ben who were kind enough to take mom to her AA meetings. They didn’t have to do that, but they did it out of love and caring. Thanks to Uncle Richard (moms brother) for his help around the house when I was working or out of town, I really owe him!

Sadly there are not too many others to thank. Mom had a great circle of friends who just seemed to disappear when she came home. Maybe its out of fear of what to say and do for her, or maybe its something else, I don’t know. But shame on me for not reaching out and asking for help, no one to blame for that but myself.

This page is not going away. It’s a free blog page I plan to update a lot or more if I can. Something to keep in mind for yourself or even your own parents; have all your affairs in order you never know when something like this is going to happen to you or them. The mess and stress and strife it leaves behind is not something I wish on anybody, not even my worst enemies.

Sunday, October 01, 2006

Mom breaks child labor law racket
















Well not really, but Liz did put mom to work for her upcoming show at the Huron Applefest. Liz had mom putting plastic fall leaves into soap bottles and she did quite well (and stayed out if Liz's hair for a couple of hours!)

Friday, September 01, 2006

Picasso Donakowski

















Mom made some more progress recently, in fact she is stringing sentences much better and is also remembering more things about the past.

Liz had her doing some artwork on one of her statues that resides outside the house! See the picture above!!

Friday, August 11, 2006

Sue gets out and about

Hey another long awaited update for Sue is at hand. Its amazing what each day brings and the changes we see. For those of you who don’t see her everyday, may not see subtle changes, but see major changes. Day to day, even from Monday to Thursday is really amazing.

To start Sue has already meet and exceeded her occupational and physical therapy goals. Her trainers are quite amazed as to the woman they saw two weeks ago, and she is no longer going to receive that help. They want to focus the remaining covered days with speech therapy, which is where she needs more work. Not that she can’t speak mind you, she does that quite well, but she still has problems with the right words. She was getting a bit lazy getting out of bed recently, claiming she needed help, so I inquired with the therapy ladies. They told me to move her bed so she can get out on her left side, not her right. Amazing, now mom can prop herself out and get out of the bed! We still have the hospital bed with rails; we are still not keen on her walking about at night. Her right side still has some neglect, but her legs are strong. We walk at the park each night (or try too) and she pretty much speed walks! I have to remind her to slow down.

She is getting more chores to do at home, like vacuum, dust and dishes. Because the right hand is still weak, the dishes are double checked by folks with two good hands! Yesterday we took a trip to Sue’s office where many of the people she worked with came by to see her. I could tell mom was both happy and sad to be there. While she misses everyone, I think she realized going back to work is not an option for her, at least at this time. Later that night she was bit perturbed at this realization, even though she did not say it. Thanks to all the friends that came to wish her well when she was there, it meant very much to her. We will come back as often as you let us, and feel free to stop by her home and visit also.

We are now on less medication too, which seems to have helped the mood, there is a lot less anxiousness it seems. On Monday Sue had her follow up with the rehab doctors and they were amazed at her progress too. We visited some of the nurses that had helped her and they were glad to see how much she came about, which was nice know.

Well that’s all for now, and I hope to touch base soon here again as things progress.

Friday, July 14, 2006

Home Update

It’s been a week since mom came home and finally things are getting better. The first few days were very difficult for Liz and I, and I felt totally out place and unable to be a caregiver. Liz had some scheduling issues with work but spent the first night with me (thank God because I was a nervous wreck), and after that I was there 24 hours a day for 2 days straight, with Liz coming in to calm the nerves between work shifts. It was during those moments I thought WTF have I committed myself too. There was a point where I lost it for a moment, and thought, I am going to have to put her in a home.

But things changed.

Within a few hours of being home mom realized hey, this where I live and this is where I used to smoke too! She started to look for cigarettes and could not find them, but she DID BUG FOR SOME! I mean it was constant every 5 minutes. After a day we caved and gave her some, and that was a bad idea, for it turned into a chain smoking ordeal. This stroke has left her with some very compulsive behaviors, such as changing TV channels, combing her hair and putting on Chap Stick. We have finally weaned her from the smoking part of it, but the other behaviors continue! It’s very hard to watch TV I must tell you, and sometimes we take the controller from her and give her one that does not work, but she is getting wise to that!

My wife found a nurse who has come in twice and done a great job helping. We are thinking we can use her maybe twice a week to help off set some mornings for us. She is wonderful with mom and mom seems to like her too. I also found an Elder Day Care center 4 blocks from her house and they are willing to take her on as a ‘day timer ‘ as needed. This place keeps the folks very busy and makes them tired for the night time sleeping. They also do activities and exercises and provide a hot lunch. I am going to try and utilize them also and not break mine or my mom’s bank in the process. I am working on her financial needs, paying bills, lining up Social Security benefits, and tapping into her IRA. I look at it this way, if she were to pass, what good would her assets have done in this time of need? (Thanks to my dad for that pointer).

Each day brings progress, mentally and physically. She can bath/shower herself (with a little help) and use the bathroom (it’s hard to pull up or put on clothes when one are doesn’t work to well) but I do not trust her to be alone or cook, those things will HOPEFULLY come back for her. She starts her PT/OT/SP next week (July 17th) and Liz will be taking her there for that. Our goal is to get right arm usage back a bit more and a steady balance to walk unaided as needed.

It’s been an enlightening experience for me. I have gone from a do what I want, when I want kind of guy, to taking the focus off of my needs and giving them to her. It was high time I grew up and became the man I should be, so I have mom to thank for that. Check in often to the website and see new stuff as often as I can post

http://suedonakowski.blogspot.com/

Thursday, June 29, 2006

Mom comes home on July 5th

Thats right, you read that correctly, Sue comes home next Thursday July 5th.

I hope your next question is, how are Mike and Liz going to accomplish helping Sue and living their own lives?  How will they maintain 2 homes and keep mom safe and still keep their own jobs?

Ok, ok, as you can see we don't have this all figured out yet, but we are looking to her friends to help out.  Liz and I thought about bringing her to our home, but that did not seem to fit too well.  All the bedrooms are upstairs, and we felt mom would do best at her home.  Abbey can come home, we can get her to therapy, but we will need some help until we can figure out how to get/pay/cover a home nurse to come in and possibly stay.  So, I m asking for your help.  Could you help us maybe 1 day a week, or help us get a set schedule going so that we can get mom some good coverage?  My plan is to stay the nights, but would need someone there in the am and day’s to watch mom and help out.

Tuesday, June 27, 2006

Mom gets funky in rehab!

Yesterday, Liz (my wife in case no one knew that yet) spent all afternoon with mom during her rehab period and she said Mom did awesome. Her PT person said Mom is making great strides and hopefully another week will help her even more. Here is a pic of moving some rings back and forth on a curved wire

And here is a pic of her eating solid foods for the first time!

She doesn’t each much and I cant blame here, its puree'd and tastes none to good.

Saturday, June 24, 2006

Solid Foods!

Mom has finally gotten solid foods! She has passed her swallow tests and now can start to be weaned off of her tube feeding. Until she can eat better, she will have the peg tube to help nourish, but she does get semi solid foods now. Yesterday we had puree'd chicken and mashed potatoes and gravy! YUMMY I think!

A week in rehab brings big changes

Well, the move to Wyandotte rehab has been good. Its been a while since the site has been updated, but I was off on a minor vacation.

During my absence, Sue has made some great progress, and appears to have regained some motor and cognitive skills. She has also been helped along with some anti sleeping drugs, such as Provigil and Ritillin. These two drugs appear to have put mom into a mode of being more alert and able to have conversations. She does use yes and no quite a bit, but longer more thought out sentences take a bit more time. She does quite well now in therapy and can walk with one person helping. She was given a cane and can use that with some limitations.

She was approved for another week in rehab which puts her there through the 28th of June. If she does well again this weekend and during the week, she could be there one more week. If you plan to visit Sue during the week, please go after 6pm in the evenings. She is in rehab from 9:30am to 4pm most days and is very tired for about an hour after. She does get therapy on the weekend but its not posted or the same each time of day. Its not as intense so weekends are ok. If you feel up to it, wheel her outside, she does like that.

Thursday, June 15, 2006

Sue leaves the hospital!

Today's news is the best in a long time, Wyandotte Acute Care has accepted mom into their program, and now the fun really begins!!! This means that Sue will be getting some pretty hefty therapy and our goal is to get her back home and taking care of herself and Abbey.

Thanks to all of you that visited her and kept her in your prayers. I really think all that encouragement is what is keeping her motivated!

Wednesday, June 14, 2006

Abbey makes a visit!!

I must give credit where credit is due, and this time it goes to my wife Liz. On Sunday night she visited mom and decided enough was enough, on Monday Sue was going to get up and show people what she could do.

And Liz did it

On Monday afternoon and after laying in bed for 9 days and fooling everyone she was a bump on a log, Liz got mom to stand, walk, shower herself, wash her hair, comb her hair and lastly brush her teeth, all on her own. The nurses and the aides were amazed, and said, we didn't know she was capable of doing this. Funny we thought, we have been telling them for 10 days she could do this stuff. We will have to put this in her chart so others will know too, was what they said. Finally affirmation of what we knew was possible.

Liz got Sue to also sit in the wheelchair, and go down the end of the hall and watch out side. Then another idea set in, maybe Liz could take mom down stairs and bring Abbey to the hospital and see how mom does. Liz asked the nurse if it was possible and she said, just bring the dog up here to the floor, so I did.

Later that evening I carried Abbey in the halls, up the elevator and into her room. The look of surprise and happiness on Moms face was amazing. I have not seen her talk or interact so much in 3 weeks, and she was very happy to see Abbey, and vice versa. The I told mom, this is why you must do therapy, to come home and take care of your dog again, and she agreed by saying yes.

Then again on Tuesday, Liz got mom up again, and her wash her face and comb her and brush her teeth again. This time more un-believers saw her, including the neurosurgeon. This time he made notes. Again people could she was more than a stroke victim laying in a bed.

Please stay tuned till Thursday, I think we will have more good news to share with you. Thanks again for all your prayers and thoughts.

Sunday, June 11, 2006

Mom is still sleepy...

So when you go to see Sue does she seem sleepy? I get the feeling she is playing a cat and mouse game sometimes, like you look away and then she looks at you. Then when you look back, she closes her eyes.

All the nurses and Dr's seem to think she is "out of it", but I know better. She can hear and she listens, and can even respond sometimes, then she goes away again. Anyone who knows mom, knows she is not a quitter, and is very fiesty when she wants to be, so I am at a loss for why she is this way. Up to 10 days ago she was cleared to go to the intensive therapy unit, but after this infection, now she is acting like a big lump. Because of this, she will now go to a stepped down unit, most likely Rivergate Medical Center in Riverview. Is it like a nursing home, I guess in a way it is, but she will get her therapy, just not as tough as she would have at Wyandotte.

If you go to see her, please encourage her as much as you can, but dont make it easy on her either, its still a long road ahead.

Wednesday, June 07, 2006

Moms infection gets better

While she still has about 3 more days to go on this stuff, Moms white blood cell count continues to drop down. A normal person has a count of about 3k to 10k, Sue's was at 20k+ when they discovered the issue. As of last night, she was down to about 16k, so as time goes on she should be getting better.

Tuesday, June 06, 2006

Struggle Continues

Mom has had a minor setback, but she continues to hang on and remain cognitive. A urinary tract and blood infection have delayed her recovery and her transfer to physical therapy. While I know that Oakwood is doing the best that they can for her, I am very concerned that she has been laying in bed way to long now. She needs to recover from this infection so that she can get to Wyandotte rehab as soon as possible.

Yesterday and today visitors continue to see her, so please go and talk to her and make her aware she can leave as soon as we kick this infection. She will interact with you if you hold her left hand and ask her questions. Tell her to squeeze your hand if she understands what you are asking her. In fact she gave me a high five and waved when I left yesterday.

Tell her not to give up, tell her to fight and remain positive.

More tomorrow!

Sunday, June 04, 2006

Sue Donakowski suffers a Stroke

On Wednesday May 24th, my mother and friend to many wonderful people, suffered a left Cerebral edema as a result of a stroke. Thankfully this occurred at work and her co-workers were able to get her to the hospital within 30 minutes. Had this happened to her at home it may have been hours before someone would have found her.

Sue has been in the hospital for 11 days now and was been making some progress, but now she is very sleepy most of the time. The hospital cannot do much for therapy wise, but tougher times are ahead, for she begins her physical therapy on Monday June 5th at Wyandotte hospital. Sue can talk, but her speech is sometimes unclear. She can walk with assistance and even can perform simple tasks, such as brushing her teeth or squeezing your hand to acknowledge questions you ask her.

She still fails her swallow tests, so a feeding tube was inserted into her stomach to allow her to receive protein, and she is doing better. After 11 days in the hospital, she is somewhat weaker but her skin tone is still great. She has no bedsores and can use the bathroom if she gets help to get in there.

This website will be used as away to communicate her progress to her friends and family who have access to the interenet. Please keep Sue in your thoughts and prayers, we feel she can make a pretty good recovery, but she is going to need time and encouragement.