TOGETHER

**Disclaimer:  This blog does not give any medical or financial advice.

 

Mom and I are in this battle to put the ulcerative colitis into remission TOGETHER. Her battle is my battle! I fight my depression to put on a brave front and a smile for mom every single morning, afternoon and evening. She so enjoys that I have breakfast with her.  Lately, for breakfast, every morning, we’re enjoying a soft boiled egg, half a banana and half a croissant with our decaf coffees. Today for lunch, I haven’t a clue as to what to serve mom. I know I’m roasting a chicken this afternoon so she’ll have a thigh for dinner with some greenbeans.  The Prednisone is helping…I think…But…it is also increasing urination, which she did a lot of anyhow due to the lasix, but I think it’s more now. Tomorrow we are seeing the new gastro dr for the 2nd time and I will ask him about that, but I am also faxing her cardio/internist tomorrow when I know he’s in his office to let him know EVERYTHING that has gone on in the past week and for him to get back to me tomorrow regarding my Lasix and Prednisone questions. He will.  It’s so much easier to fax questions to the dr.  than asking them on the phone; I find this way the dr can refer to the patient’s chart, think about the questions and then just call me with a response.

Yesterday, I took mom sightseeing right in our home town. She loved that we drove to the golf course, we waved to my husband playing basketball in the same park as the golf course. We also drove to a beach that has a fishing pier and we both remembered my dearly departed brother taking my 2 kids fishing there with both mom and me. She really enjoyed that outing. I’m hoping to get her into the car again this afternoon. I stay local. I hate driving now.

TOGETHER

**Disclaimer:  This blog does not give any medical or financial advice.

 

Mom and I are in this battle to put the ulcerative colitis into remission TOGETHER. Her battle is my battle! I fight my depression to put on a brave front and a smile for mom every single morning, afternoon and evening. She so enjoys that I have breakfast with her.  Lately, for breakfast, every morning, we’re enjoying a soft boiled egg, half a banana and half a croissant with our decaf coffees. Today for lunch, I haven’t a clue as to what to serve mom. I know I’m roasting a chicken this afternoon so she’ll have a thigh for dinner with some greenbeans.  The Prednisone is helping…I think…But…it is also increasing urination, which she did a lot of anyhow due to the lasix, but I think it’s more now. Tomorrow we are seeing the new gastro dr for the 2nd time and I will ask him about that, but I am also faxing her cardio/internist tomorrow when I know he’s in his office to let him know EVERYTHING that has gone on in the past week and for him to get back to me tomorrow regarding my Lasix and Prednisone questions. He will.  It’s so much easier to fax questions to the dr.  than asking them on the phone; I find this way the dr can refer to the patient’s chart, think about the questions and then just call me with a response.

Yesterday, I took mom sightseeing right in our home town. She loved that we drove to the golf course, we waved to my husband playing basketball in the same park as the golf course. We also drove to a beach that has a fishing pier and we both remembered my dearly departed brother taking my 2 kids fishing there with both mom and me. She really enjoyed that outing. I’m hoping to get her into the car again this afternoon. I stay local. I hate driving now.

Good Morning

**Disclaimer: This blog definitely does NOT give any medical or financial advice.

 

Woke up feeling good on this Sunday morning on the East Coast…not the heaviness I sometimes feel from depression over Mom’s condition. It’s a new morning; yesterday was a good day for Mom and I told her that, she needs reminders.

Today my husband and I are married 32 years, but because yesterday was a good day and I was in a good place, emotionally, we celebrated our anniversary at a local Italian restaurant last night. It was so very delicious. We had baked clams and we each had a shrimp dish; mine with risotto and pancetta and my husband’s with linguini and spinach. I ordered their calve’s liver veneziana to go and will give mom a small portion of that today for her dinner.  Many years ago I had the real thing in Venice…so many years ago.

Tomorrow mom and I will visit the new gastro dr and let him go over her ulcerative colitis history (I’ve typed it up for him) and let’s just listen to what he has to say. I reassured mom we’re just getting a 2nd opinion…he may agree with her current gastro dr…he may not…all decisions are up to us. I’m not looking for anyone to do any invasive testing!!!!  

Yesterday I bought mom a very sweet and delicious cheese danish which she requested. She ate some of it and will probably consume the rest today. I made sure she had an egg for protein at breakfast time.  I know that if I remain calm, it helps mom remain calm.  It’s a new morning and I’m hoping for another good day!

What Will Today Bring?

**Disclaimer: This blog does not give any medical or financial advice.

I am so grateful that my mom’s doctor did not hospitalize her at yesterday’s scheduled appt. Her cardio/internist has been treating mom for nearly 20 years since the time she moved near me. Besides being a very good doctor, he’s just a nice human being. When mom was getting her echocardiogram yesterday, I left the room for a few minutes and cried to her doctor.

After the echo, mom had her exam. Her doctor said the bloodwork was all fine…echo showed the usual leaky valves which she’s too old to do anything about…she can reduce the Lasix to 3X a week, but if I start to see swelling, then go back to daily. He said she can eat anything, but stay away from very salty foods, so no kosher pastrami for mom. She told him she has no appetite and she won’t drink those Ensure drinks or anything like them.

I asked her doctor about the gastro dr and he had only good things to say about him, knows him well. I believe that if my mom’s dr didn’t like the gastro dr, he would somehow imply to me, to make a change. He said it was up to me (and mom, of course) to get a 2nd opinion. Mom likes her gastro dr., so we’ll wait a while until I think we may need a 2nd opinion about the ulcerative colitis.

Mom was exhausted when we left the office. But…good news…she requested shrimp for lunch. My husband and I took her home so she could shower and clean up. With the ulcerative colitis, accidents happen.  I ordered shrimp scampi over pasta and fried zucchini, yes indeed, from an excellent Italian restaurant by us. Hubby went to pick it up. On a small plate (that’s how I present things to mom so it doesn’t look overwhelming), I dished out 2 shrimp (a very nice size), some pasta, 3 pieces of fried zucchini and on the side a small piece of semolina bread. Folks…she ate it all!!!!   I ate with her and then I prepared another small plate for today’s lunch. I told her lunch will be a main meal from now on and she can have anything she wants. I realize this meal was salty and I forgot to tell them to not add additional salt. I’ll remember next time. To see her enjoy the food was such a gift to me!!!!!

Tomorrow my daughter will spend the day/night (but not sleep over) at mom’s as my hubby and I go to Pennsylvania (about 4 hours away) to attend tribute to my late uncle’s life. My daughter doesn’t drive, so she’ll have food delivered and whatever she orders, mom will have some.

I really was scared that mom’s doctor was going to order us straight to the hospital so I am GRATEFUL that he didn’t. He also said I have plenty of time to worry about weight loss. Mom weighs 159lbs…for her that is the lowest weight ever. She’s 5’6″ (used to be 5’7.5″). 

Won’t bother posting menus anymore, cause I don’t know what each day will bring and what mom will want to eat. No more planning in advance.  In the meantime, hoping today will be a better day and that having her granddaughter over tomorrow will lift mom’s spirits.

In the Early Morning Present

**Disclaimer: This blog does not give any medical or financial advice.

I have about an hour and a half until I go to Mom’s for our morning routine. I hope she slept better and wasn’t awakened with the bathroom. Today we have mom’s regularly scheduled appt with her primary care physician who knows what’s been going on with the ulcerative colitis since I faxed him over a week ago. First mom will have her echocardiogram and then we’ll see the dr, whom I’ve always liked and mom has been seeing him for about 20 years. He’s a cardiologist. I don’t know what to do for meal planning anymore since mom’s appetite is nil and when you witness that in someone who loved food so much, it’s very, very depressing.

Mom’s younger brother, a well respected historian and professor died in March and this Saturday is a tribute to his life. Of course mom can’t attend and I wasn’t going to go because I didn’t want to be out-of-town all day into the evening. My daughter told me the other day she wants to stay with Grams, so that is great.  My husband and I will represent the family and I’ll speak at the tribute which will also have music.

But…I also have to see what her dr says this morning. I have to stop thinking of “what if” scenarios, very hard to do…for me!!!!!!

 

 

Ups and Downs

**Disclaimer: This blog does not give any medical or financial advice.

“…as life happens there are tons of ups and downs. It’s a journey of discovery – there are moments on mountaintops and moments in deep valleys of despair.”-Rick Warren

Emotionally, it is so hard being a caregiver…if the patient is down, you can’t help but be down yourself even while trying to lift the patient’s spirits. So, yes, everyday, I go through with mom what we are grateful for: “Getting up…”    “You” (meaning me and me meaning mom), having her own home and her family nearby, etc.

I don’t believe she’s eating enough. I prepare the meals. I am so much more lenient now because I want her to eat. My cousin said buy those Ensure drinks…Mom will never ever touch those things. We saw the gastro dr. this past Friday and continuing on the Asacol. This Thursday we’ll see her regular dr who is her cardiologist and internist. He’ll see that mom has lost weight, she’s at her high school weight of 160lbs, that part she likes.  I bought some lox so tomorrow she’ll have a little lox and cream cheese on a half a bagel and I hope she eats the whole half of the bagel!   Today I got a 2″ diameter blueberry pancake into her for breakfast with a coffee, that’s it. For lunch she ate a little cheddar cheese over a little chopped salad and some matzo (no, not a whole board of matzo). For dinner she has a little potted chicken, meaning 2 of the “leg” portions of the wing with rice, greenbeans and carrots. I’ve been juggling watching what she eats to get the glucose level down (she won’t go on diabetic meds), but wanting to provide foods that she will eat. Did I tell you she loved the 6 steamed shrimp dumplings last week and ate all 6 in one sitting??? That was unbelievable. I am getting a shrimp with lobster sauce lunch on Friday that she’ll have for dinner Friday and Saturday. 

Mom’s spirits were better from the get-go this morning, so if her spirits are better, then mine are too. We’re connected, folks, what can I tell you. There are many ups & downs to caregiving, but we have to go through them and navigate them the best way we can.

Today my son called mom from India and that is always a source of happiness for mom. My daughter calls her several times a day as I’ve previously mentioned. This Friday she’ll see her granddaughter because she’s coming to sleep over and spend some time with her grams. My children are mom’s only grandchildren and they mean the world to her and she means the world to them. They’ve a very close bond.

“Can’t Help But Wonder Where I’m Bound.”

**Disclaimer: This blog does not give any medical or financial advice.

I used to always listen to the folksinger, Tom Paxton, and his line, “Can’t help but wonder where I’m bound, where I’m bound, Can’t help but wonder where I’m bound” just popped into my mind. Mom said this morning she wants to see the gastro dr the following Friday and I said, NO, cause if you want to see him, we’ll see him THIS Fri and that’s what we’re doing. We don’t know where we’re going with this ulcerative colitis and I wonder….is it even ulcerative colitis?  In 2009 when diagnosed, she had had her first colonoscopy. In 2010 when it reappeared, she had had a sigmoidoscopy. This time around, not tests, no bloodwork, nada. Yesterday I took mom to lab for her cardio dr.’s bloodwork so I called his office this morning and told them to fax a copy of bloodwork results to the gastro dr.’s office for Fri. The cardio dr. must first share the results with me before faxing to another dr. so he’s going to call me and he usually does.

My stomach is in knots. I just walked thru the park, enjoying a cup of decaf as I do this posting, will shower, read and try to relax. I can’t tell mom what to do; I can’t tell her which meds to take; it has to be her decision..it’s her life. I can only support her decisions. We made a list of questions for the gastro dr that we’ll present to him on Friday. If he’s tired of seeing us, too bad.

I went to the store and they had such a lovely beef stew with greenbeans already cooked and a lovely yellow rice with peas and carrots, that I bought some and went back to mom’s an left in fridge. That will be tasty.