Just Sayin’…

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

 

2 days ago was a particularly bad day, a “long day’s journey into night.” I was at mom’s from about 7am until after 5pm, didn’t want to leave her. Yesterday was a much, much better day and I was able to really rest in between visits to mom.

On Monday we will see a new gastro dr who is part of a well-respected group; I couldn’t get appt with the dr recommended by my own physician and by some friends of mine because he is away for 2 weeks, but I heard this dr is very nice, too. In fact, I heard all of them, besides being very good drs, are very nice and they call back!!!!!     I feel we need a 2nd opinion regarding ulcerative colitis…what can it hurt?   He may totally agree with mom’s current dr, fine!   He may not…we’ll see.  At first mom said no, but then she agreed. I told her she’s doing it for me.

I slept much better last night, thank goodness. I am also not going to do my leg lifts with my ankle weights, I think I pulled something yesterday, so will just take it as easy as I can….I like doing that, especially!!!!!!

For the past 2 days, I have been going to the bagel store and buying coffee and one breakfast sandwich on a nice soft roll and mom has been eating almost half of that with me eating the other half. I usually eat All Bran with sliced banana and some pecans, much healthier…Oh Well, blame it on Mom!!!!   Since I am not being Herr Commandant anymore on what Mom eats and just want her to eat, I bought a small container of sour cream and put it in her fridge. Perhaps mom will have some sourcream and sliced banana for lunch, she has always enjoyed that…me, too!   Last night she enjoyed the shrimp and pasta I made for dinner. Very simple: I sliced some garlic and chopped some onion finely and sauteed in olive oil with a little salt, pepper and parsley flakes and I then threw in some pasta. I tossed that with 6 pre-cooked shrimp I bought at my fish store. Mom ate half of that for dinner and will have rest today. Now I’m going up to roast some chicken wings before I go to Mom’s this morning. She may have some, maybe 2 (3 might be too much, maybe not, who knows?) tomorrow night for dinner.  I’m taking it meal by meal, day by day..just sayin’.

 

Traveling New Territory Together

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

 

Mom and I are traveling this new territory of aging and illness together. We have no plans, just each other and hopefully, good medical treatment. I called her gastro dr on Monday and his secretary did get back to me with his message that he told us several times that Mom should take the suppository…yes, it’s true, he did tell us several times. So, I laid down the law on Monday and I did it for mom and I will do it every single day. I pray it helps. We do have an appt for this Friday at his nearby office, so if Mom wants to see him, we can.  I had also called a new gastro dr and have a tentative appt for Monday, but even his secretary said he may say the same thing (suppository).  Ideally, it should be done at bedtime, but, honestly,  that is too late for me. I lie down very early from exhaustion and I do have insomnia.  What I started to do is return to mom’s in sort of the late afternoon, between 3:30-4pm, a fairly quiet time as far as visiting the bathroom is concerned. I make sure she’s clean, just do it, she puts on her pjs, and I sit in her guestroom with her where she has Dad’s old electric bed that stays in one position: elevated legs, elevated head and we watch CNN.  I stay 1-2 hrs to ensure all is quiet, she’s calm, suppository is retained. 

I threw out all of the food I had in Mom’s freezer. She wasn’t going to eat it. Yesterday she requested a Ceasar’s Salad (which I knew she shouldn’t really have for Ulcerative Colitis). I bought it, kept most of it for myself (it was truly delicious) and put a small bowl in Mom’s fridge. I also bought 6 pre-cooked shrimp, medium size. Well, last night she realized she shouldn’t eat the salad on her own, so I’ll throw it out today. She did enjoy the shrimp. Then she had a few teaspoons of ice cream. Today is a new day, it’s pouring here. Each meal, each day is new, I can’t even buy groceries until we figure out what the hell she’s going to eat.

New territory indeed!    I look at Mom and I see my grandfather so clearly now in her face! Last night was his Yahrzeit, the night to light a special candle in his memory. I left the Yahrzeit candle out for mom, I’ll see if she remembered. They’re very safe, in small glasses.

We will reiterate what we are thankful/grateful for: Each other, she’s in her own home, she’s alive…blah, blah, blah. Does it help?   I don’t think so, but I’m trying to remain positive and hopeful even though it is so damn hard. I told mom that being positive and hopeful affects her body chemistry and brain and perhaps that impacts the illness as well.

Foreign Terrain

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

 

Being a Caregiver for one’s parent is foreign terrain, a foreign body of water, a new ocean. I’m doing it step by step, I’m treading water carefully, it is all consuming. I think of mom when I try to go to sleep and I think of her upon rising.

Today I am calling Mom’s gastro dr because the Asacol is really NOT working. The ulcerative colitis is not improving and she needs to be off the medication. This dr is extremely busy, gastroenterology is BIG business. I will call the office, get the name of whom I’m speaking to, tell her to tell the dr about my mom and have her call me back with a response. He doesn’t call. My mom’s cardio dr calls, but the gastro dr., forgetaboutit.

Believe me, I have the name of another gastro dr and soon, if we don’t get any satisfaction, I will call and make an appt. Mom is listless, depressed and who can blame her?  She really doesn’t want to make any decisions.

I am not doing menu planning or cooking in advance. I am letting her eat what she wants. Yesterday she had a half of a mini bagel with a little cream cheese and I told her if she didn’t eat it all, I wouldn’t tell her about her brother’s tribute to his life this past Saturday in Pennsylvania, which my husband and I attended. (It was great.)  She ate the half of mini bagel.  For lunch she did prepare for herself a half a banana with Special K cereal and milk and guess what, right after that, she ate the piece of lemon cake with lemon filling and coconut frosting that I had left in the fridge. That was a surprise. We played Scrabble after lunch. For dinner, I had a small lobster steamed and my husband took the tail out of the shell and cut it up into bite-size pieces. When I spoke to mom on the phone, she said she ate it, it was good and she had it with a little cocktail sauce and a tiny dollop of potato salad that I had left.

It’s 5:30am as I write this post, out of bed since 4am. I get to mom’s about 7am to open windows, air out the house, clean and wait for her to get up and start her day. I am making more frequent trips to mom’s home which is only 2 miles from my home.  The time is not right yet to hire someone to help. I will know when that time arrives. Then, how to go about doing that?   How do you know who’s entering your home? That will be another foreign body of water to navigate….I know that.

“Hope is the Thing With Feathers.”-Emily Dickinson

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

 

Yesterday attended and spoke at a tribute to my uncle’s life, a celebrated and much loved historian and professor. He was mom’s younger brother. It was nice meeting and seeing cousins and spending time with family.  It was a very long day. We left our home 11am and picked our daughter up at mom’s just close to midnight. It was a very long day for our 31 year old daughter. She saw first hand just how tired her Grams is, how depressed her Grams is and how she has no appetite and visits the bathroom way too often. Spending so many hours with Grams was probably also a reality check for my daughter and she saw what I see every single day.

I woke up from my very few hours of sleep already apprehensive about the day. What can I feed mom?  How can I lift her spirits? Of course I’ll tell her about yesterday and how everyone sends their love to her. Perhaps I’ll read to her what I said at the tribute, she’s my biggest fan when it comes to listening to anything that I write, always has been.

Mom and I will have to make a decision about calling the gastro dr yet again and discussing another medication since I don’t believe the Asacol is helping her and I know the Lialda didn’t help her either.  We are not sticking to any kind of diet now since that didn’t seem to hurt or improve her condition.

I’m probably already depressed because of yesterday’s lengthy excursion and going to sleep too late and still not sleeping any later.  Hopefully I’ll get to walk in the park later on with hubby after we take our daughter to the train to return to the city.

 

Thinking Positively

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

 

Today I am going to a celebration of my mom’s younger brother’s life out of town, about 4 hours from where we live. My daughter is coming in this morning by train, I’ll pick her up, take out anything she wants for breakfast and deposit her at mom’s. She volunteered to stay all day into the evening with her beloved Grams. I think having my daughter all day will help mom refocus on the positive things in her life. Not that mom complains, she never complains, is a lovely person and really does try to stay positive, but it’s so very difficult. With the ulcerative colitis, she lives in the bathroom…may not do much, but gets many, many urges. It’s a very difficult disease to get a handle on.

My daughter already knows that she’ll have Chinese food delivered for dinner…she knows her Grams loves that and will nibble on that.  Yesterday I left a piece of coconut lemon cake in Mom’s fridge and she had that with a glass of milk for her dinner. I am not going crazy anymore limiting  Mom’s intake of sugary foods; though I am not going to let her just live on that, either. Everything in moderation.  I want her to have some enjoyment and food used to bring her that, no more, really. This was a woman who loved to cook and loved to eat and was never thin a day in her life. To me she’s so thin at about 160 lbs. Her internist said on Thursday that I have a long way to go to worry about mom losing too much weight.

i will try very hard today to stay positive as we leave our hometown and get on the road. It will not be easy, I know. Mom wants me to go; she wishes she could go. I will honor Mom’s request since I know her granddaughter will be with her.

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!!!!!!