Tired today...

Was at Magnolia only briefly today.  My friend Stephanie and I had a late lunch and went to visit my folks.  Dad was sleepy, but responded a little when I spoke to him.  Mom was very tired.  but, they had given her a muscle relaxer and her pain meds about 45 minutes before we got there and they were kicking in big time.  She still wanted to go to the dining room for dinner, as she fought to keep her eyes open.  She finally agreed she needed to rest.  She said that she did sleep through the night last night though.  YAY for Ambien!:)

Mom and Dad had some visitors today.  Family friends Diane and Marion.  We really haven't spoken to Marion since before Dad got sick, so it was nice she was able to stop by for a visit.  She brought my Mom some lovely yellow tulips...Mom's favorite color.  And Diane lives outside of Palm Springs, so it was good she was able to see my folks while in town.  I guess Dad slept through the visit, as he does most visits, but Mom got to chat with them.  Mom loves her visitors!:)

Much love!

All in all...A really good day!

I spent most of the day down at Magnolia again today.  I met with the hospice nurse today, and we will be officially starting hospice for Dad on Friday, once the swallow evaluation is complete.  They will be looking to provide things that are going to work to keep him comfortable, including a new mattress that will be better for his skin, oxygen (if he needs it), more frequent bed baths and company.

Today was a very good day...I got to give Dad chocolate ice cream...And he gobbled it down with no problem, and loved every second of it!  He polished off two of those single servings in about 7 minutes.  And at dinner, he ate all of his mashed potatoes, all of his butterscotch pudding, half of his roast beef, all of his milk, another chocolate ice cream, and half of his vitamin water.  And he enjoyed every single little bite.  I was almost afraid that he was going to overflow seeing

 as how he hasn't eaten in a few weeks.  It was so good to have him eat and truly enjoy something, a gift from heaven.  He wasn't very conversational, but I did get a couple smiles and lots of eye contact.  I am sure he is still tired from yesterday.

Mom was not as good today as she was the past few days as far as her patience and tolerance goes, but better than she was before.  She says she is trying to be a better patient, and this means that although she gets frustrated, she is not screaming all the time, and not banging on her bed.  She still expects me to push her around when I am there but she isn't as quick to snap, and is usually calm enough to listen to me when I tell her to calm down if she gets anxious.  Today, she was a little more impatient, but I think she was more tired today.  She said she took 30 steps on the bars, with assistance, and I am still convinced she is not sleeping well at night.  The nurse and I discussed it, and we are going to try the lowest dosage of Ambien tonight to see if it will help her to get more solid sleep.

Today was like a mini holiday.  Mom, Dad and I all got really wonderful, impactful cards from family back East, Mom got a gorgeous Harry and David gift basket from her sister and family, and Mom got a kicky sun hat.  One of my friends at work loves her haircut, but is thinking ahead for summer...Her head will be prone to sunburn...So, she bought Dorth a wonderful sun hat.  Dorothy looks so cute in it!  See for yourself!:)

Ain't she something???  Thanks Mariana!:)  She loves it!  Anyway, it was all such a good day all around!:)

Much love to all!

Things are looking up!

I spent most of the day down at Magnolia today.  One of the nurses called me to tell me that they were going to be doing Dad's barium swallow test out in the parking lot today.  I guess they have a van where they can distribute the barium and take the x-ray.  Good news is that he passed!  He is now released to try thickened liquids and pureed food initially, and then if all goes well, we may be able to move on to other food.  But, chocolate ice cream is a thickened liquid, and so is pudding!!!  YAY!

Unfortunately, since Dad has such thin skin, the simple act of getting him into his wheelchair caused very large skin tears on his legs.  I went down early so that I could spend some time with him while he was in his wheelchair.  Since the damage had been done, we left him in his chair for a few hours.  When I got there, he was on pain meds, so not really as lucid as he could have been, but he was responsive when spoken to.  I wheeled him outside, and we sat in the sun for about 25 minutes, and he was so happy to be in the warmth.  We talked a little, and then I read my book while we sat.  It was really nice.  We finally had him put back into bed, and they cleaned his new skin tears and gave him some pain meds.  They will keep the tube feeding at night for 3 days and then reevaluate to see if he is able to take in enough food to survive.  Now that he is able to eat ice cream, one of the very few pleasures Dad can still enjoy, we are meeting with hospice tomorrow to evaluate him, and move him on to hospice care.  I am looking forward to the additional attention he will receive, and the additional care to help keep him comfortable.

Mom was a little feisty today, but really, she has been a great deal better over the past few days.  Much more patient and aware of her actions.  Not nearly as likely to fly off the handle if she doesn't get exactly what she wants when she wants it.  She knows it too.  She keeps telling me that she tells the staff that she is going to be a good patient, and not yell anymore.  And I think she is actually doing pretty good following through with that.  Now, she is not a perfect angel, mind you, but she really is acting better.  I still don't think she is sleeping through the night.  I am working with the nursing staff to observe and document her behavior over the course of a couple of nights to get a baseline.  And if she is not sleeping enough, I am going to push for some sleeping pills.  She falls asleep when they give her the muscle relaxer and Ativan, but, I don't think she sleeps all night long, and has a hard time going back to sleep if she wakes up in the night.  Her PT went well today, and she is able to take a few steps along the rails with assistance.  I watched a little today, and the therapist does have to advance her left foot, but she seems to be able to place weight on it as she moves her right foot.

She is very anxious to go home, but she also is starting to come around to the benefits of Magnolia I keep trying to convince her of.  I want to be honest with Mom, without taking away her incentive and enthusiasm.  I want to be realistic with her.  I tell her that it is good for her to be at Magnolia, where she is getting entertainment, good care, physical therapy, food taken care of, clean sheets, dozens of people she can meet and converse with, and most importantly, the chance to see Dad any time she want, while he is still here.  It may not be the quality time she would want, but, like I keep telling her, she needs to take what she can get.  It is a good thing I am in sales and marketing, because using my work skills on Dorth seem to be working...Slowly, but working nonetheless.:)

I have been off work for awhile, since after Mom got sick.  It has really allowed me to not only try and deal with all that has been required with these situations with Mom and Dad, but to take time to look out for myself.  It has still been very difficult emotionally and just plain logistically.  I love my job, and I miss my wonderful friends and co-workers, so I am looking forward to getting back.  However, I am nervous about handling it all.  At least I know that both Mom and Dad are in a good place and being tended to, and that is a weight lifted off my shoulders.  But there are still houses and cars and bills to look after, insurance companies to fight with, and whatever else lays in our path.  So, I will be going back soon, so wish me luck, and if the blog begins to be a little less frequent, please know I am doing the best I can.  

Thank you to all who have been so supportive of me and my family.  I know I say it a lot, and I hope that doesn't detract from the sentiment, because I am truly thankful for the cards, phone calls, emails, text messages, meals, food, prayers, wishes, thoughts, visits, love and more.  They have kept me going, through it all.  They have been a source of happy tears, and laughs, full belly, smiles and an escape I/we have needed.  Thank you and bless you all.  Just that you care enough read the blog means a great deal to us.

Much love to all!

A very nice weekend.

Mom had a pretty good weekend, and so did Dad.  His pain was minimal.  He did wake up and talk a little to me.  I just love to see him smile!:)

Aside from the ongoing tour of the nursing home that has become routine when Dorth sees me, we have had some really nice conversations over the weekend.  I found out that it is mostly because other visitors have beaten me to the punch.  From what I understand, our wonderful friend Patty got the brunt of Dorth's demands before I got there.  Bless you Patty for being so good to my Mom...Now and always!  Your kindness and patience is truly a gift.

Our friends the Sullivans also came by today.  Mom really enjoyed talking to them.  She loves her visitors!

By the end of the day, Mom was exhausted.  I am hoping that she will get a good night's sleep tonight.  One of the nurses told me she worked the night shift last night and that Mom was up all night, calling for pain meds...I could be wrong, but I don't really think she is in that much pain, but she just gets bored, and therefore she concentrates on any pain, and makes it worse by focusing on it.  She was dozing off at 7:00 when I left.

Here's to a good night's  sleep!

Much love!

"And I will call him Ollie..."

Well, tonight was quite a nice night with Dorth.  I found out it was because my Aunt got their first...So, she got the brunt of the list of demands.   By the time I got there, she was pretty settled and we had a great evening.  I did push her around the nursing home about 11 times, but we talked a lot, and actually had conversation.  We stopped a few times because she wanted to rest her butt a little, which means she wanted to get off of it for a minute...So, I helped her to stand up near one of the hand rails a few times.  I have to admit, I am pleasantly surprised at how strong she has gotten, and how well she is doing physically.  She still does not have much use of the left arm and leg, but she is getting to the point where she can at least use her right leg to support herself, while the left might help a little with balance.  She said today in PT, she was so tired, she almost fell asleep during her workout, so they cut today's PT session short.  I think she over did it yesterday.

She had me help her stand about 5 times, and she needs help getting up, and she does need support when she is up, but I was surprised at how balanced she was.  And then, when she was ready to get into bed, she still had a cup of decaf, so I decided to have hear sit on the edge of the bed.  When she first had her stroke, her PT in the hospital was simply to sit up in bed.  She did not do this very well.  And even when she first got to Magnolia, she was unable to keep herself sitting upright with out any assistance.  So, I figured, I would sit her up and have to stand behind her and hold her to keep her steady.   Much to my surprise, she sat on the edge of the bed with her feet flat on the ground, and I wheeled the tray table with the coffee over to her.  She rested her right elbow on it in between holding the straw to drink her coffee.  She was able to sit there for about 15 minutes.  She was pretty much exhausted when I got her in bed, and she was ready for a good night's sleep.

One of the things she has been obsessing about lately is dogs.  She tells me that she saw a dog on TV and his name was Dexter, and if she ever got a dog, that is what she would name it.  She has told me this story every day for the past week or so.  She originally said she wanted a white dog, but apparently she saw a Boston Terrier on a commercial, and now she is fixated on a Boston...But she thinks that dog looks more like and "Oliver," so she said "I would call him Ollie."  I told her that I happened to see a Boston at the pet store in Parkway Plaza today, and that he was $800...She doesn't think that she will be spending $800 on a dog.  Well, then she started trying to rationalize it by saying that it will be a friend for Newman...My question was why Newman wasn't good enough to be her dog...She said that she wants a "clean dog..."  Um...What the heck is that supposed to mean???  I mean, yah, Newman smells...Like Newman...Not sure what sort of scent Mom thinks a Boston has...Maybe she thinks it will smell like baked beans or cream pie...And let's be honest...Who would be taking care of this lovely canine addition?  Yah, that would be me.  So, I am not really encouraging anything more than the idea of a dog...;)

So, I bought a book the other day on strokes.  I just finished reading the chapter on right brain strokes.  It says that some of the symptoms can include:  numbness or weakness on the left side of the body (check), difficulty in performing daily tasks (check), perception difficulties (check), left neglect (check, but much improved), visual memory impairment (hmmm, not really), excessive talking (check), short attention span (ummm, yah...Big check!), poor judgement (check), time disorientation (check), loss of left visual field (not really...Yay!), impaired abstract thinking (check), extreme emotional highs and lows (check), impulsiveness (oh heck yes, check), and lethargy (um no, but a little of this might be welcome from time to time...).  So, I guess what I a getting at is that the presentation that Dorth has is most likely stroke damage, not medication.  I still have a lot to read in my book, but there might be some medications to help treat some of my Mom's symptoms, and some may improve with time and rehab.  One day at a time...:)

Dad was sleepy tonight, but he did wake up enough to tell me he wasn't in pain, which is always a good thing.  When Mom and I were in there, he stretched his hand, and wiggled his fingers, at the same time, Mom put her hand on his leg, and he set his hand down on hers.  She is convinced (and elated)  that he reached for her..I am not sure if that was the case, but I am sure not about to take that idea away from her.  It made her night.

I hope everyone has a wonderful weekend!  Hooray for beautiful San Diego weather!!!:)

Much love!

Maybe a little better today???

Well, Dorothy seemed to be little better today.  Now, don't get me wrong, she was still pretty demanding, and agitated, and bossy..But, maybe just slightly, less so.

She was riding a huge high after PT today, where she used the rails to take 10, count them 10 steps and she is getting better at manipulating her right foot.  She is getting stronger every day!  She still ordered me around, but I wasn't there very long, so, it really wasn't too bad.  She wanted to go into the activities room/dining room for some coffee, this was after lots of drama getting her out of bed.  But once she was in her wheelchair, she was ready for action.

I made her some decaf, and she was in her wheelchair near the table.  She likes to go backward more than forward in her wheelchair because it is easier to push with her foot than to pull herself.  So, she kept pushing herself back away from the table into the room, and then she would tell me that she wanted coffee, and I needed to go and push her back to the table.  She started getting mad at me when I told her I wouldn't continue doing this, but she couldn't stay mad because I just kept laughing at her and she realized she was being silly...So, she wasn't as mad, but it didn't make her want me to push her back to the table any less either.

Dad was ok, but still sore from swelling.  I am still trying to get him more protein in his diet to try and help alleviate the edema.  And, I went in and pushed the administrator at the nursing home to change out the house doctor, because we still had that same guy...I hope it will sink in this time that I am really serious.

I will be following up again tomorrow...;)

Much love!

A long couple of days...;)

Sorry no posts the last two nights, but I have been pretty busy with stuff...I did my parents taxes for the first time. Geez, my taxes are so simple...Theirs proved to be a little more complicated that I had thought, but I got them compiled and to the CPA. And then last night, I spent from 5:30 pm-12:30 am in the Sharp Grossmont Emergency Room with Dad. They decided to send him because his edema (swelling) has not gone away. He still has a touch of pneumonia (you can't tell by talking to him or hearing him breathe), but no sign of infection. They did a blood panel and urinalysis, and all of that looked pretty good.

The doctor came in and told me that the edema is being caused by him not having enough protein in his system. When there is not enough protein, the walls of the veins, vessels and capillaries tend to get a little weak, and they start to leak fluid. This fluid leaks out into what they call the "third space" or "interstitial space," which means it is outside the cells. It is pretty hard to get rid of once it gets in there. My Mom was having the same problem when she was in the hospital, so I asked if we could give him albumen through his IV to help strengthen the walls of his capillaries and other vessels. The doctor told me that albumen only lasts about a day, and then I asked if he got more protein in his diet, if this would turn around. He asked what he had been eating, and I told him "um, nothing, he has been NPO (nothing per oral) since he was admitted into the hospital a week and a half ago, with the exception of the nutrition he is getting through the feeding tube." I asked if he new if the fluid was high in protein, and he didn't. Either way, he told me that they couldn't do anything else for him, so they sent him back to Magnolia.

He was doing ok today, but the edema is painful, so we are helping him with pain meds. And I have asked if they can research if his nutrition is high in protein, and if not, can we find something that is. I will be following up on that tomorrow!

Mom was quite upset when Dad went to the hospital, but she was back to herself today. I am afraid that she is not really changing much with the change in medication. She is still quite agitated all the time. No one ever moves fast enough for her. She wants to do everything right now and boy, does she get mad when she can't. I am guessing that this is just how she will be now...A new personality, I guess. She has brief moments when she says things like "I know I wasn't very nice to you, and I don't know why..." So, I think she understands what she is doing, but just has very little control over, well, anything. So, it has got to be frustrating to be in the situation where she is in a place where she needs help, but to also have little control over your emotions must be a double whammy. It doesn't make it any easier on me or the Magnolia staff, but I just keep hoping that at some point, there might be a sort of acceptance or calming with Dorth...Sort of an awareness or humility. Right now, she cries wolf over everything...Not because she is faking it, but because, to her, everything is a wolf, and a wolf is a wolf, no matter how big, or small or ferocious or tame. Now, please don't think I want her to stop fighting, or trying, or striving to get better or stronger, but it would be easier on all of us, most of all her, if there was some sort of rationalization behind her actions...An awareness of how her actions effect those around her. Everyone keeps telling her that she will get more with honey than she will with vinegar, but the vinegar must be closer...:)

Well, we will have to just keep doing all we can to see if there is any thing we can change to help her along, and just be as patient as we can as she makes her journey...:)

Love to all!

More of the same...

Well, Mom should be coming down of the new pain meds. They stopped them on Friday, and it takes a couple of days to get out of your system. They now have her on her old standby Vicodin, which she was taking before the surgery. I have high hopes that some of the mood swings and impatience is due to the meds...We will have to see in a few days.

The weekend went pretty well. Dad is still having swelling in his legs, and they took him back off food this weekend. He has another swallow test tomorrow, and hopefully he can go back onto thickened liquids at least, then maybe onto solid foods. His congestion is almost all gone (hmmmm, just a few days after he got Prednisone...I'm still pretty bitter about it all...). He was having some pain today, so he was dozing for most of my visit.

Mom seems to be getting stronger. They can get her standing with support, and she is taking a few steps with a special walker. She is taking a step and dragging her left foot, but it is a start. I am so very proud of her and happy she is making an effort. It is a tough road for Dorth...This does not sit well with her. But, she does like to receive the kudos when she does good. She has been quite a challenge for me and for the staff. Patience does not seem to be in her vocabulary. I can't imagine what she is going through, but I am hoping that some of this is due to medication and she will be a little more tolerant and accepting that not everyone can do things as she deems perfect. This was always a bit of a riff between us when I was growing up. She is neat as a pin, and I, frankly, am not. I would fold something, and she would unfold it and refold it because it was not "just right." I guess I never saw it as much of a problem and always kind of overlooked it, but now that she can't fix things on her own, maybe this is more of and issue than I could have imagined. Either way, off the meds, I am hoping for her to be a little more calm, less paranoid and hopefully happier...Although, she is still happy with her "Britney-esque" head shaving incident...So, I guess that is something.:)

Hope everyone's Valentine's Day was a good one! I got to celebrate my best friend's birthday at a lovely party...Great friends, great food (2 cakes!), some "Rock Band," and lots of laughs. A really nice night with friends...It was a really good break for me!:)


Love to all!

"Aimee...We never get to talk anymore..."

Well, Dad was talkative today. He didn't make a whole lot of sense, but it was good to have him awake and talking. He is able to have some things by mouth, as long as they are thickened to the consistency of honey. Hopefully, he will continue to improve and he will be back to ice cream and chocolate soon. He did sound a great deal less congested today.

When I first got there, Mom was sleeping, so I went in to see Dad. I got to talking to one of the nurses, and I could hear my Mom hollering for a nurse...So, one of the CNAs went to see what was going on. She came back and said that my Mom wanted decaf, so I told her I would go get it for her. So, in I walk with her decaf. Mom immediately tells me that she needs a new nightgown and robe and a new top sheet, and she needs some lipstick and rouge on and she needs me to help her do this and that...(which is what she does to the staff all the time), and so I spend the next 45 minutes doing all that she asked, with her judging and commenting on how well I am doing everything, which is never up to her standards.

I finally get through with her list of stuff to do, and I need to go because I have an evening class I need to go to (I am trying yoga for the first time...Goodness knows I need some ways to relax). So, she asks me to do another 3 or 4 thngs and I tell her that I can't, but I will let the CNA know on the way out. And she says to me "Aimee, I was so looking forward to your visit, but we never get to talk anymore..." I wonder why...;)

Much love!

Should we call you Kojak? Yul? GI Jane?

Well, quite an interesting day to say the least. I went down to the hospital after talking to the doctor. Dad was awake and chatty. The doctor sent him back to Magnolia this evening. I asked if they could keep him one more night, but he said there was nothing that can be done for him that they cannot do at the nursing home. So, he arrived just after 6:00 p.m., and he was really hurting. It is such a labor to move him at all, and having been moved almost daily for the past few days really takes a toll on him. The nurses at Magnolia gave him some pain meds and he drifted off to sleep. He needs a good night's sleep. Once we get the infections cleared up, and the congestion handled, hopefully he will be able to enjoy some ice cream and chocolate again soon. And once we can get him fixed up to where he was, we are going to bring in hospice. I am not sure exactly how much time Dad has left, but it is time to start considering his comfort and what little joys in life he has left. He still loves visitors, so if you come to see him, wake him up!


Well, the other interesting thing that happened today, is that I got to Magnolia around 2:00, and when I rounded the corner into my Mom's room, and she was sleeping...Oh, and bald. Yes, bald. More bald than my Father...I am glad she was sleeping because the look of horror on my face must have been tremendous. So, I slowly back out of the room, and turn to the day nurse and with my eyes wide as dinner plates, calmly ask who shaved my Mom's head. She took a step back and said "I told them you wouldn't like it, but Joe approved it..." So, I went to talk to Joe, the administrator, who wasn't in his office. So, I went back to Mom's room, and this time she was awake. I asked her who shaved her, and she told me that one of the ladies in the activities room did it...I asked her why, and she said "because I asked her too, and I like it!" About this time, the afternoon shift was coming on, and one of the CNAs stopped in to say hello...And froze in her tracks, mouth agape, eyes wide...Then she swung and looked at me...I said "Don't look at me, they did this when I wasn't here." I got this same reaction from everyone seeing her for the first time...All looking at me in horror, wondering what happened...


I did finally get in to see Joe, and I asked him if he were trying to give me a heart attack now, and he looked at me, confused. I asked him if he had seen my Mom, and he said "this morning when she came in with Gladys and asked if Gladys could cut her hair..." So, I explained that she was bald as a newborn baby, and made him come and look. He was quite surprised, but she claims to love it and that it made her day. Walking back to Joe's office, he tried to explain to me that he is trying to foster an atmosphere with the staff to help the residents by granting small wishes when possible...He said that although what happened to my Mom wasn't quite what he had in mind, she seems happy...I said, "Yah, today...But what happens when she comes to me tomorrow or next week and asks why I let that happen to her???" One of the ladies saw me wheeling Mom into her room from down the hall, and later when I was calling the hospital to check on my Dad, she said "I saw you wheeling someone before, I thought it was your Dad..." I told her no, indeed it was my bald Mom. I told Mom I am going to tape a bow to her head like they do newborn girls...

She claims to like it, that she has always wanted to do it...Yet when she looks at herself in the mirror, she says things like "I look like a refugee." I told her that they got all the cancer, she doesn't have to go through the hair loss of cancer treatments...One of the things Dorothy likes the most is the shock on everyone's face. She is loving being the center of the action, and is really relishing in it. I am afraid the novelty is going to wear off quickly, and the regret will set in. I swear she is crazy...But, in reality, she was slightly better as far as her mood goes...Good thing I guess. The nursing home has not been instructed by any doctor that Mom is not responsible for herself, so they granted her wish...Oy vey.



Anyway, Dad is back, Mom is bald...Interesting day all around I'd say...Much love!

Well, today was a good day. I got out a bit with my friend Stephanie. We went to see Dad, had lunch and took a look at computers, and then went to visit Mom.

I did talk to the doctor today twice. This morning, the doctor informed me that they would like to put Dad on Coumadin, which is a blood thinner. It will help to dissolve the clots he has in his legs and prevent new ones from forming. However, it is a really crazy drug. It thins your blood so much that you have to be careful of anything that might cause you to bleed, because it is very hard to stop it once it starts. I shared my concerns with his arms, and although they are better, he still has the significant bruising and splitting of his thin skin. The doctor said that it is either the Coumadin, or he has significant risk of the clots doing damage to his circulation, causing stroke or heart attack, or pulmonary embolism, all of which are pretty bad things. So, he will be starting that treatment today.

Then later in the afternoon, when I talked to the doctor, he said that my Dad failed his swallow test, and he was aspirating whatever he was eating into his lungs. I have been telling them that it is because of the congestion, and if we can just get that cleared up, this would not be a problem. I am not a doctor, but I am with him every day, feeding him, watching him...But, they all look at me with that "I will humor what you have to say" expression...Goodness, this healthcare stuff really sucks sometimes. Anyway, so that my Dad is getting nutrition until this congestion gets resolved, I agreed to an NG feeding tube, the kind that goes in your nose and down your throat. Not the most comfortable, but I think the right thing to do until he can get a little better. The doctor said that they may release him tomorrow, but when I was there early this afternoon, his legs were still very swollen. I am going to go early tomorrow (after I try and get a hold of the doctor on the phone) and see if we can wait until some of the swelling and water retention goes down before he gets discharged.

But, on a separate note, Dad has been more alert and awake and communicative in the hospital than he has been in months! Steph and I, and some of the nurses talked to him, having good, cognizant (for the most part) conversations for about an hour, and then he was awake when my Aunt got there later in the afternoon, and they talked for a while too. I am not sure why he is so awake and talkative..Is there some medication they are giving him (or not giving him) that is causing this? Not sure. But I think it is primarily because he has a change of scenery. New sounds, new smells, new people...And if you know my Dad, he loves to charm people...And I think he figures he has charmed all the ones at Magnolia. He is a lot like this when he goes for doctors appointments...Not sure if that is it, but I will enjoy it all I can!

I only saw Mom briefly tonight. She was very tired, and refused to eat her dinner. She did have her shower today, and she told me she had PT, so that probably took a lot out of her. She did want me to shave her head though...I keep asking her what is wrong with her hair, and she said that she wants it cut a little shorter...Now, keep in mind, the hairdresser gave her a short little 'do a week ago, that is pretty cute on her...Kinda spiky on top...If I cut it shorter, she will look like she has a flat top...I told her we would discuss it tomorrow. I think she is just going through some depression (who wouldn't). I let her sleep tonight, and will go and see her tomorrow, maybe she will forget about the haircut.:)

I found out today that one of my neighbors from when I lived up in Orange County is facing a battle with breast cancer. My thoughts go out to her and her family, her two young sons and her wonderful husband. She is a very tough, strong, determined, smart, sensitive woman, and has gotten me through some tough times in my life. I know that she will take this on like one of her mountain bike races...Strong steady start, peddling hard when necessary, coasting when possible, and despite the hard work and pain, pushing onward, with the grace and persistence she puts into everything she does, taking nothing for granted, and not letting up until she has passed the finish line. Bless you Elaine.

Much love!

Very eventful day...

Well, today was quite something...It is the best way I can think to put it. It all began with a phone call at 10:00 a.m. from Alvarado Hospital...Long story short, the night nurses were ordered to try and get a urine sample from Dad to see if he has a urinary tract infection, and when they couldn't, they had him admitted to the hospital for the congestion and possible infection. Turns out that this allergy congestion we were begging for the "House Doctor" to treat turned into a bit of pneumonia, and he also was incredibly swollen and retaining water. So, they are treating him at the hospital...I guess Sharp Grossmont was full, and so they took him to Alvarado, where he was seen in the ER and then admitted. But of course Sharp does not want to pay their competitor, so they had him transferred to Sharp Memorial, because Grossmont does not have any room...Sheesh. Needless to say, Dad is getting treatment, and if all goes well, the doctor treating him says he will probably be in there for a day or two. Oh, and by the way...The "House Doctor" is on vacation this week anyway...

Now, I love the staff at Magnolia...The ones that I know anyway...However, the night nurse, who I have never met, I have my doubts about. Upon looking at my Dad's chart, even though there is a large post it and several other notes indicating that I am the main point of contact now, this genius goes in at 4:00 a.m., shakes my Mom awake and tells her that they just transported her husband to the hospital. Freaking brilliant! Maybe he hangs out with the "House Doctor" on their off days...Sheesh.

Just a couple other interesting facts about today...When my Aunt and I got back from lunch, there was a tech doing an ultrasound of my Dad's legs to try and find the cause of some of the swelling (he has a few blood clots that are contributing to the problem, but he is being treated for that too). The tech asked who we were and then proceeded to tell us that he worked with my Dad at Rohr years ago. And Dad remembered him! So, special thanks to Jim Whitemore for cheering up my Dad!

Oh, and he is in one of the new rooms at Sharp Memorial...It is nicer than what it looks like on the TV commercials!!! Flat screen, large, bright room, looks like a 5 star hotel room! The bathroom even has it's own shower! And the shades are remote control! I will have to admit I was quite surprised at how nice it all is. However, I really could have waited a long time before seeing it...:)

Now, as far as Mom goes, she is still experiencing bad mood swings and episodes. We are trying to come up with any answers, and changing what we can. They have changed her pain meds, but it will take a few days for the old meds to get out of her system. So, hopefully the next few days brings her some calm and rationality. We keep having to encourage her to eat...She gets so hung up on worrying about getting fat...I told her that she is only halfway to fat...She needs to be closer!!! She is worried about Dad, but not as worried as I thought she might be. Ah well, who knows, I am not sure what to expect anymore...:)

Anyway, hope all is well with everyone!

Much love!

Very.Long.Weekend.

Well, Mom has been at odds all weekend. She is mad and frustrated and, well, basically crazy. She has basically turned into Mr. Hyde. I am just not sure what is causing this anxiety, and there are several possibilities. It could be the pain meds too...Just know way of telling. It is just so hard, because she seemed to be doing better for a couple days, but now she seems to be getting worse. For a couple days, we all thought that maybe she could spend a month or two, learn how to best deal with her limitations, get stronger, and that maybe she would go home, with help. But, if this keeps up, I am not sure that is going to be a option for her. I am not making any rush to judgement, and certainly hope it is only temporary, but she has really done a 180 when it comes to being my Mom. She is driving the staff crazy...She will call them in 15-20 times during the night...That lack of good sleep can't be helping. Just taking one day at a time...Although, my friend Steph and her Mom, Joyce stopped by on Friday for a visit and brought my Mom the most beautiful roses from her yard. They smell sooooooo good and are such a lovely assortment of colors. Thank you ladies, on behalf of Mom and me...Because I get to see them every day!

Dad is not doing very well either. I am up to here *hand indicating forehead area* with the so called "House Doctor." My Dad is suffering so much with this chest congestion caused by allergies, and this dumb doctor won't prescribe the short, limited dose of Prednisone that he already did once. I noticed Friday night while I hung out in his room reading that he was suffering from sleep apnea. He has never, ever had that problem in the past. So, our lovely little nurse Ivana called the on call doctor to see if she could get that doctor to prescribe the steroid. When that doctor turned her down, she explained the difficulty breathing and the apnea, and that doctor told her to have him admitted to the hospital. UGH! I had the nurse inform the Administrator, and he came down and told me that he would call this "House Doctor" himself and insist that he come by on Monday. So, Ivana called back and had the on call doctor prescribe some decongestants to hold him over on the weekend, but unfortunately, they prescribed Nasal and Sinus decongestants, so he really didn't get much relief at all.

So, I do have an appointment in the morning, but I am going down to Magnolia after that, and boy if I run into this "House Doctor," he will be getting some strong words from me.

Anyway, I am hoping for some positive changes this week. And maybe some indication of what is really the cause of Dorth's anxiety/insanity...

Much love to all!

Today was a bit of a disaster, really...

Well, true to form, overdoing it yesterday made today a huge challenge for Mom. I had appointments for the bulk of the day, so when I was walking across the parking lot, I could see several people in my Mom's room. So, I went in the front door, and rounded the corner into her room and said "what is this? A party up in here?" Well, apparently they had just got Mom settled back in bed after falling out onto the floor. It looks like she didn't hurt herself, thank goodness. They told me that she said it was because she was reaching for the phone, and tumbled out...Which got me a scolding from the nursing staff for her not having a cell phone. I wasn't home, but there was a message on my home voice mail from Mom at 9:51 am...It was Mom..."I need you to get down her right NOW! Thank you...*click*." Then later, she told me she fell because she thinks she might have been looking for her hairbrush...I think she thought she could try to get up by herself, but she won't readily admit to that...She says "you may be right, but I just can't remember..."

She really gave the nursing staff a run for their money today. And me too for that manner. She basically disowned me and told me that she needed to call her nieces Lvonne and Lynece (from PA) to come out and take care of her. I told her that they are busy women and have other responsibilities, but they send their love and prayers...She did not like that answer. When I headed home tonight, I asked the nurse to give her an Ativan to calm her down a little.

We went through a lot of the same stuff when my Dad got sick, but I always thought it was because of the tumor...Maybe there was more damage to Mom's brain than I had previously thought...Maybe it is just that being overtired, frustrated, embarrassed, and feelings of being trapped combined create this same effect...I am just not sure. She was just combative and wanted to start an argument with anyone over anything. She eventually threw me out and told me not to come back tomorrow...Boy, is she going to be disappointed when I roll in..:) Actually, she is scheduled to get her hair cut tomorrow, so hopefully she will be rested and in a better mood. I am also convinced that when she is feeling good and overdoes it, it really sets her up for failure the next day. It is hard, because, as she keeps reminding me, SHE is the Mom...SHE is the adult...It has got to be hard to relinquish control of anything to your kid, but, if she continues to be stubborn and bullheaded like that, then she is not going to get better. At one point, she told me to call my Uncle to come down so he could help her...I told her that if my Uncle came down, he would tell her to buck up and adjust her attitude...She didn't like that, but she knows I am right.

So, now she has earned herself one of the loud personal alarms that will alert the staff if she tries to get out of bed again.

Dad was about the same. They have started breathing treatments with a nebulizer to help with his congestion. It seemed a little better, but not much. I fed him dinner tonight, but he has developed this new habit of taking a bite, chewing it forever, and then forgetting to swallow. So, I spent like 20 minutes virtually yelling at him and bribing him with ice cream to try and get him to swallow his mouth full of food. In the end, he drank all his milk, all of his OJ, ate all of his ice cream, and I went and got him an Ensure, which he completely sucked down without taking his mouth off of the straw. And after all that, when I was about to leave, he was more awake than I had seen him in a while. So, I stayed a few more minutes, and he smiled at me, and promptly dozed off.:)

I just want to send a shout out from my heart and on behalf of my parents. Thank you for all the cards and emails and phone calls. Your love and support makes such and impact on us, and personally, it is often what helps me get through the day.

Much love to you all!

A better day...:)

Well, as predicted, Mom was better today. First, no hot flashes!!! However, she needs to learn how to pace herself. She is so desperate to get better, that she is trying to run before she walks. She did have PT today, and on top of that, she got in her wheelchair 4 times...Including, at 7:00 pm. She asked if there was still time to get her in her chair, and I immediately said "no," and the nurse that was standing there said "yes." Well, who do you think she listened to? So, in the middle of cleaning up dinner and prepping patients for bed, the CNAs got Mom into her wheelchair, and I wheeled her around. A visit with Dad, a couple laps around the building...And she was exhausted...Well, she was exhausted before she got in the chair, but was really struggling at 7:45 when she wanted to get in bed. Well, there was no one available to help her right then. So, I tried to talk her through not overdoing it so that she won't be exhausted tomorrow when it comes to PT time. I think that is what happened yesterday. She had tired herself out so much on Monday, that she needed a day of rest.

Oh, and guess what else happened today...I walk in at about 3:30, and what is sitting on her nightstand? A freakin' telephone! So I asked her who gave her the phone, and she said "Arleen the social worker did and you can't stop me from having it! You can't trap me like that!" Boy, was she mad. She said "why don't you want me to have a phone?" So, I said "I don't want you calling people at all hours of the night." And she said "Don't worry, I won't call you, I will call whoever I want. If I want to talk to my sister, or Paula, I will do it when I want to!" So, I said, "Mom, they don't want to talk to you at 1:00 am because you are bored either..."

I am not sure she remembers phone numbers at this point, so she is probably calling random people...We went through this with my Dad, and he would make the staff call my Mom and me at 2:00 and 3:00 am...Those late night calls are scary. Maybe as she gets more comfortable and more aware of time and what not, it might work out...However, until then, if she calls you in the wee hours of the night because she is bored, I apologize in advance.

She was very tired tonight, and I hope she will get a good nights sleep. They said she slept very well last night. She is still getting used to it all.

She and I wrote some thank you notes tonight, and I was sort of surprised to see that after a few attempts at signing her name, her handwriting was almost as beautiful as it was before surgery. That is one thing I will always admire about my Mom. She has the most beautiful penmanship. Not surprising considering what a perfectionist she is, but I still love how she writes. I bought her a wirebound notebook tonight so she can practice writing, and write herself notes...And any of you who knows my Mom well, she LOVES her notes! And that will help her with her short term memory as well.

Dad was sleepy, as always. He did not want his dinner at all. I got him to have 3 bites of pineapple (yay vitamin C), and all of his milk...That was it. But they usually give him 2 ice creams in the evening. He just loves the sweets. He sounded horrendous tonight with the congestion. The nurse was going to call and see who was on call to see if we could get a 5 day regimen of the prednisone...It has helped in the past. Dad did wake up a little when Mom came in to see him. He didn't really open his eyes, but he was talking to us, well responding to us a little. It is hard to see him like this, but I am glad he is not in pain. It is most likely caused by the delayed side effects of the radiation and the chemo can cause extreme fatigue. And it compounds as you take it, and he is going on his 8th month of chemo. We are weaning him off the steroid he was on (Decadron), and that may help, but we won't know for sure for a few weeks.

Anyway, if we can just get Dorth to pace herself a little, then I think we are on to something. After being there just under a week, she really is improving by leaps and bounds in many ways. She keeps asking me about what is going to happen, and she cracks me up when she says things like "I don't want tennis balls on my walker!!!" And "I think if I get a little motorized scooter, it will be pale yellow...I love yellow." She just has to learn that she does not need to do it all in one day. I am thrilled by her enthusiasm, but if she pushes so hard one day, that she has to rest the entire next day, she may not get better as quickly. Maybe I will have to tell her that famous "Turtle and the Hare" story..."Slow and steady wins the race!" I also think she will do better as her energy level increases. Oh, and they finally weighed her today...And she weighed in at 86 lbs. This is after hi-calorie tube feeding for over a week, combined with actual eating for just under a week, so I can only imagine how much she was weighing when she was in the hospital prior to having the feeding tube. To be fair, she weighed in a 90 lbs when she checked in before surgery, when she was healthy. I told her we need for her to strive for triple digits!

I got her an appointment to have her hair cut on Friday. That will make her feel better I think.

Much love!

There's going to be a few bumps along the way...

Well, for Mom, today was not as good of a day. She was tired all day, and refused both PT and her shower. She was feeling a little blue by the time I got there in the evening. By the time I left, she was doing much better and was looking forward to a good night's sleep.

I asked the nurse if the "House Doctor" had come by, and she said yes, but he did not write any orders for Mom's prescriptions. UGH! So, she called his answering service and said she needed to talk to him immediately. He called back, and she was able to get him to order the meds we had been requesting. Not a fan of that man...

So, after my pep talk today, a good night's sleep, and the correct meds, tomorrow promises to be a good day for Dorothy. She does keep asking me to bring her a phone, but I am just not sure I want to do that. The CNA's keep telling me that she will be up at 1:00 am asking them to call me, and they don't, thank goodness. I can only imagine what she will do with a phone. I am just going to keep putting it off until I can think of a really good excuse for her not to have one. Wish me luck with that one.

Mom really enjoyed a visit from our friend's the Helmantoler's today. And she was so pleasantly surprised when one of the CNA's that we like so much gave her a get well card thanking Mom for letting them care for her. It is the little surprises in life that make it so special.

Dad was ok tonight. Still congested from his allergies, but he ate quite a bit of his dinner...Well, quite a bit for him anyway. All he would say to me was "Hmmmmm-hmmmmm..." If he wanted to say no, then he wouldn't say anything at all...I did get a "Stop!" at one point when he didn't want any more potatoes, but that was the extent of our conversation.

Much love!

Another day of progress...

Still trying to get Mom's meds right, but we are not getting much cooperation from the so-called "House Doctor." We have had some battles with him in the past with some of Dad's medication, and now he is causing problems with getting Mom on the right path. Now, I am not professing to know more than him, or to have a medical degree, but it sure would be nice if he would actually come and meet Mom before denying her hormone replacement therapy she has been taking for 30 years...Poor woman is having hot flashes every hour! From what I understand, he is supposed to evaluate her within 72 hours of her admittance...Which he hasn't, and the longer he takes, the longer Mom goes without the meds she has taken for years...Sheesh!

Other than that, she had a really good day. PT came in and got her into a wheelchair, and she and I went and sat outside for awhile, took a couple laps around the nursing home, visited Dad...She really enjoyed getting out of bed for a few hours. It did make her tired though!

She gets her first shower tomorrow, which can't come soon enough for her. She is so looking forward to it. She will also do more PT tomorrow. She was so excited to get into the wheelchair, she didn't really pay attention to HOW to get into the wheelchair. She was also in a lot of pain at the time. However, tomorrow is another day, and I am sure she will eventually realize she needs to be present for PT...Hopefully they can control the pain a little better. They tried to teach her how to maneuver her chair with her left hand and foot..Which resulted in a small circle. Her little slipper was not grippy enough for her to be able to use her good foot to keep the wheelchair going in a straight line. She has a long way to go, but she is certainly motivated.

She is doing well eating, although she spilled her apple juice today, which frustrated her, but she will have moments like that in this road to recovery.

My Aunt and Uncle came to visit and brought Buddy, their (almost) 4 month old Chocolate Lab. He has gotten a lot bigger in the last month! Mom got to see how much he had grown, and tried to show him to Dad, but he didn't really pay too much attention.

Dad has gotten another allergy attack. About 3 or 4 times a year, he gets this crazy allergy issue, where his chest gets all congested. He takes Zyrtec every night as a rule, but sometimes he just gets this awful chest congestion. Before the brain tumor, his doctor would prescribe a short 5 day regimen of Prednisone, and it usually cleared it right up...Well, guess what...The "House Doctor" at Magnolia doesn't really believe in this. We had to fight and fight and fight him some more last summer when Dad had it...And when he finally consented to the medication, Dad got better...Hmmmmm. I wonder if it will be easier this time...We will just have to see.

Anyway, it was just a lovely day, and I got to spend most of it with Mom because I was hoping to meet this "House Doctor," when he was supposed to visit today. Well, he never showed, so I am glad I was there to celebrate in her first day of PT, and to sit and talk with her (and fan her during her hot flashes), for a good part of this beautiful day of sunshine.

Tomorrow is chock full of errands and appointments for me to attend to, so Mom will get her first dose of "doing it on her own" for a good part of the day. I told her I would be there in the evening so I could make sure she would be presentable for her "fanfare." That is what she has started calling all of her visitors. She just charms the pants off of just about anyone who enters the room. The entire staff loves her and she just pours on the kindness and quipy sayings to make everyone laugh. She is just so thankful for the help and happy to be alive. She gets downright mad when one of the other residents is not kind to the staff. She is very protective that way.

And she couldn't be in a better room. The other two ladies are out all day, so when she is in her bed during the day, she is in there alone, and can doze off if she wants. Although, she is beginning to display one of the same habits as my Dad...I think her hearing has improved about 10 times! That woman hears everything! Conversations up and down the hall, car doors in the parking lot...She is all up in any business she can be. She has even memorized how the staff walks so she can identify them as they come into her room. It is crazy! Although she tells me it is because there is nothing else to do. Hopefully, she will begin to enjoy her TV more now that I have gotten her cable turned on.

Anyway, another good day. Looking forward to many more to come!

Much love!

As good as to be expected...I guess...

Well, you are all probably dying to know how the reintroduction went...Good and bad. I took Dad to the doctor, and while we were waiting for the van to come pick him up, I told him that Mom had been sick and had been in the hospital. His eyes registered momentarily....Then blank. And I proceeded to tell him that she would be getting better and stronger at Magnolia. His response was "Aw, shoot." He meant that he was upset that she was bad enough to have to come to Magnolia to recover, not that he didn't want her there. So, I told him I would meet him back at Magnolia and we would go and see her while he was in his wheelchair. When we got back, I wheeled him into her room. She wanted me to roll him right up next to her bed, and so I did. She kept trying to get his attention and to get him to hold her hand, and he just didn't have it in him. Mom burst into tears. I think she was hoping that him seeing her sick in bed would trigger some sort of protective empathy from him. I am afraid he just doesn't have that ability anymore. She eventually got over the shock of it, and she is anxious to see him as much as she can.

She is doing pretty well. They have not quite gotten her meds right, but she is supposed to see the house doctor tomorrow, and hopefully he will get everything worked out. She is at least doing pretty well on pain meds at this point.

And she is eating!!! When lunch came on Friday, I was upset there was no soup. She was having so much trouble in the hospital eating anything with a consistency dryer than applesauce. Low and behold, she grabs her spoon in her right hand, and begins shoveling the cooked carrots (in little cubes), rice and diced breaded fish into her mouth. She ate about 60% of her meal...Guess I don't need to worry that much about her...:) They will continue to feed her through the feeding tube until it is deemed not necessary.

She is also pretty mentally aware. There are a few things that she is a little mixed up about. She is not sleeping very well, but I think once she gets used to the sounds and people, she will be ok. She is very comfortable there, and the staff just loves her. She also loves her "visitors." So far, it has been my Aunt, our friends the Prestons, our friend Patty, and me...But she feels like the queen of England, because no matter what area the CNAs and RNs are working that day, they all stop to say hello to her at least once during their shift. She is just so happy to see everyone!

They have not really started on any PT as of yet, but I am thinking (hoping) that now that she is more settled than Friday or Saturday, that they will do something with her tomorrow. She is raring to go! She wants to walk again so badly, and is fiercely determined to do so. So, if tomorrow brings PT, her meds fixed, an appointment made for the beautician and her cable turned on...It will be a successful day.

As far as Dad goes, he has 2 months of chemo left. The doctor doesn't think he will extend it past then. He said that there is not a lot of added value extending the treatment past the 6 months post radiation. If there is no significant change in that 6 months (which Dad has had some reduction, but not much more than he had after radiation), then the side effects can sometimes outweigh the treatment. Also, his sleepiness and slow mental decline is most likely a delayed side effect from the radiation and the chemo. It is just a horrible disease that is so hard to get rid of. We will do our best to keep fighting as hard as we can.

I feel like I have been forced to wake up each morning taking one day at a time...Never knowing what the next day will bring...It is a tough, scary, frustrating, illuminating way to live. I guess we all live everyday this way, if we only pay attention. It is sort of the "smell the roses" scenario in reverse. But, then again, it makes me relish every laugh, every smile, every little success...So, maybe I am smelling the roses...And what a magnificent, sweet, exhilarating aroma they have!

Much love!