Adding Kidney Disease to the Mix

Life around here has been a little bit crazy to say the least. After over ten years without insurance my mom finally was able to get health insurance. The best part is that she was lucky enough to get a great plan. It was definitely a God send! Now that she has insurance though, there have been a lot of appointments. It seems as if every week we are getting called about another class, test, or doctor that they need her to go to. My grandmother has had numerous tests as well…..sometimes it feels like I am living in the waiting room. Our schoolwork hasn’t suffered too much, we bring what we can and do the rest when we get the chance.

One result from the many tests that they performed showed that my mom has stage 4 kidney disease. Talk about a life changing moment. There were tears, frustration, and a lot of stress. After one appointment with a kidney specialist we were given a DVD all about dialysis and living with kidney disease. After wrapping our head around the diagnosis, we went home to watch the DVD. We were expecting a boring informational DVD about dialysis but what we got was a lot different. The DVD reminded me of a timeshare pitch except they weren’t pitching a vacation spot, they were pitching life with dialysis. They made the whole idea of kidney disease feel like it was no big deal, that life would go on as normal. You just pick one of the two types of dialysis, decide if you want treatment at home or in a facility and live your life. Even though the video was a bit unrealistic, I actually like we could manage this crazy disease after the video. Of course we knew there was more to the disease than dialysis. She didn’t need dialysis yet, and may never. The doctor just wanted us to be prepared and informed for when and if the time comes.

There were a few small changes in the beginning. She can only get blood drawn from her dominant hand in order to save the veins in her non dominant hand, and there are a few medications that she was taking previously that she could no longer take. The biggest change was diet. Her diet Dr. Pepper that she loved had to go. Being diabetic we have always been told to eat more protein and limit carbohydrates. With kidney disease the opposite is true. Protein is very limited. Limiting protein, we could do that. But limiting both carbohydrates and protein, that is a bit difficult. In addition to limiting the protein we were told to limit phosphorus ( I had never even heard of that), sodium, potassium, and calcium. At first I didn’t know what I would be able to cook for her.

After talking with the nutritionist we found out that the main thing my mom had to watch was protein. We went to a few classes, but unfortunately the diabetic diet and the kidney diet basically contradicted each other. The one said to eat more protein and limit the carbs, the other said limit the protein and eat more carbohydrates. Then we were given a diet for diabetics with kidney disease, and it was a joke. What they wanted her to eat would have her blood sugar so high it would be crazy. For breakfast they wanted her to eat three pancakes, one egg, a biscuit, and coffee. Who eats biscuits and pancakes in one meal?

With some adjusting we were able to find a fairly good mix. Not only has her sugar went down, but she has lost over 30 pounds. By following a good diet, some strong will power, and changing a few medications, she was able to go from stage 4 to stage 3 kidney disease.

The tests also showed that she had quite a few kidney stones. One of which had embedded itself into her kidney and was, according to her doctor, slowly killing her kidney.  Today she is having surgery to remove that stone. In theory, once the stone is out her kidney function should improve a little. If that happens then dialysis should be a long time off.

As I sit in the waiting room while she is having surgery I can’t believe that just four months ago we didn’t even know she had kidney disease. It has been a whirlwind to say the least, but I am so thankful that she is on the road to recovery. She will always have kidney disease, but I am hoping that we can manage it and that she is able to thrive and live a great life. If you have a moment please say a prayer that all goes well with the surgery and her recovery.

G is for…..

Good Times With Grandma

Taking care of grandma is a lot of work, and unfortunately there are some not so pleasant things we have to to deal with. There are numerous questions, diapers, messes, and appointments. Sleepless nights and angry days are a weekly event. Alzheimer’s is a cruel disease that I pray they someday find a cure for. Even though she doesn’t always remember we try to keep grandma as happy as possible. Every day is different and we have learned to never plan anything where the time is set in stone, but good times with grandma are possible.

We try to get grandma out of the house at least once a week. She has been on a real sugar kick recently and her favorite place to go is to the dollar store to buy cookies. She asks, “How much is this?” for every item and once she learns it is only a dollar she says, “Well I think we better get 3 or 4 packs then”. It is amazing that a simple trip to the store can brighten her day so much, but it does.

Sometimes grandma likes to go to the Plaza and get a smoothie and a Sees Candy sample. Whenever we go to the Plaza we try to let her look around a little bit too.

Sometimes she is in a great mood and even tries out a few hats and purses. Other times she doesn’t want to look at anything.

The last few days we have found a new way to keep grandma happy. We make a campfire. She loves to sit outside, look at the stars, and just be. She really likes s’mores too!  In fact the last time we had a camp fire grandma said that it was the best night in her entire life. 
Even though she doesn’t always remember these good times, she is able to be happy in the moment, and really that is all that matters!

Care-giving While Homeschooling

We take care of my grandmother that had Alzheimer’s throughout the week and it can be very challenging but rewarding at the same time. Throw in having an injured leg that makes me hurt all of the time with trying to homeschool and some days are just crazy.

Grandma never knows how old she is. She will be turning 84 this week, but often thinks she is as young as only 10 years old….. and that can make for some interesting days. When we try to start our days sometimes she joins in on school work and other days she gets mad that AJ isn’t in a regular school. She really likes to listen to our read-alouds and often even talks about the stories, sometimes she even gets upset when we stop reading for the day.

I feel the most challenging part of being a care giver while homeschooling is our schedule. Things come up when we are in the middle of doing school work and we have to stop and tend to grandma’s needs. It can be something simple like watching her while she decides to wander in the back yard, or something like having to clean her up and shower her after and accident.

We never know when she will be awake or asleep. Some days she is up all night and goes to bed around 5am. Other days she sleeps all day, and then there are some times where she will be up for up to 36 hours straight. On times where she refuses to sleep we can’t get too much book work accomplished because I am too tired to teach and AJ is too tired to learn. That doesn’t mean she isn’t learning….. just that the book work aspect isn’t getting done. On those crazy days we stick to reading, watching videos on topics we are learning about, (YouTube is our friend) and playing games.

Is it all bad? No. There are a lot of great moments. I get to see grandma’s child like happiness when she sees something that she thinks is for the first time. We get to hear her tell stories of when she use to live on the county farm and her father use to tend the chickens. We get to see her in her own home living the best life she can. AJ is learning numerous life skills. She is learning about taking care of her family and how to put the needs of others before herself.

We don’t have everything figured out. Some days are stressful and overwhelming. I often feel sleep deprived and wish I could have a normal schedule where I knew what I was doing from day to day…….but right now we are where we need to be, doing what we need to do, and learning along the way.

A is for Adapting

I am taking part in blogging through the alphabet hosted by Ben and Me. Each week I will be writing a blog post that will in some way be related to the letter of the week from A to Z.

 

If you would have told me six months ago that I would be living with my grandma Monday through Friday helping to take care of her, I would have never believed it. Our family has went through a lot of unexpected changes in the last few months and that has affected our homeschool. Months before I pulled AJ out of CAVA (California Virtual Academy) I was planning our homeschool year. Picking curriculum, making lists of projects, and planning all the details for our year. I even started reorganizing my bedroom to make it an even better school room.
 
Then things changed. Grandma got sick and now requires someone to be with her 24 hours a day. Instead of doing school in the comfort of our home, we now have to do school at grandma’s house. Boy has that made us have to adapt. At home I have all of our materials, although I brought all of our school books to grandma’s, a lot of the time there are little things that we don’t have. We have needed food color, sugar, brads, cardboard, card stock and other little things that I didn’t think to bring with us. Sometimes we  push a project back a few days until I can get the material where other times we  just use the closest thing we can find. It has been an adjustment but we are making progress.
 
One of the hardest things to adapt to so far has been grandma. Her Alzheimer’s has gotten a lot worse and that makes school difficult some days. So we adapt. Sometimes grandma sits in on school work so that we are able to keep an eye on her. Other days we wake up early and get some school work done before she wakes up. Then there are some days where grandma just doesn’t sleep and we are up for days at a time. On those days we are not able to do school. 
 
I have learned that we just have to go with the flow and keep a positive attitude. There may be some days where no book work is done and we may not always be on track with where I had thought we would be, but she is learning. Learning that you take care of your family and put others first. Learning compassion, patience, and understanding. We may get to the math and the grammar a few days later than I planned but we can work on the weekends and a little in the summer if needed. That’s the beauty of homeschooling. The school work will be here tomorrow, grandma may not.



One Day at a Time

Grandma soaking her feet in the pool

It is so hard to believe that a little over 2 months ago my grandma was fairly independent. She would walk to her neighbor’s house, take out her trash, and pretty much was able to walk and do most anything. In the last two months she has been in the hospital and a nursing facility, been put on and then taken off of oxygen, and gone from being unable to walk in a wheel chair to walking with little assistance. Each and every day is a new adventure. Here is a little taste of the last few days.

We went home on Friday evening for some much needed rest. Friday was a bad day. She was feeling better so she didn’t think that she needed her walker, but she did. She didn’t want anyone at her house and was angry all day. She got so mad at the fact that there was a potty chair in her bathroom that she slapped me hard right across the face. I know that it is not her, that it is the Alzheimer’s, but it definitely doesn’t make it any easier.

After we left for the weekend my aunt stayed with her. On Saturday and Sunday she refused to eat or drink. She only has one kidney so if she isn’t drinking it makes her very sick. She ended up wetting herself and throwing up. After she was cleaned up she ended up wetting the bed. By the time we came back on Sunday evening she was in very bad shape. She was still refusing to eat or drink and was not making sense when she was talking. She was babbling and just staying, “no, no, me oww, no” She wasn’t able to move at all. She looked so helpless. After hours of coaxing we finally got her to open her mouth so we could drop water into it. After a while of doing that it almost seemed as if she snapped out of her delusional state. She recognized me and said how she liked my curly hair.

The next morning she still couldn’t walk and she had wet the bed again. After she got cleaned up she ate a really good breakfast and had a serene attitude. We ended up putting her in adult diapers and overall the day went well. Then when night hit things changed. She thought we were trying to poison her and wouldn’t eat her dinner until we all ate it first. She thought that some big catastrophe had happened and that we were all sick in a hospital most of all she didn’t like the fact that AJ was with us. Then she wanted to go home. We explained over and over that it was her home, but she insisted that we were not at her house. By bed time she was able to walk to her room with the walker.

She got up about three different times through the night last night because she thought that someone was knocking at the door. At 8am we found her about to go out her back door to check if someone was in the back yard. All day she has been agitated and very confused. At one point she thought she was in jail. Then she said we had to hide everything in the house so that the neighbors don’t come in and rob us. Right now as I am writing this post she is in bed wanting to know who the dog in her room belongs to and why the cats are chewing on the snakes. (She doesn’t have any animals.)

Each day when she wakes up it is a surprise as to how her brain is working. Her mobility, attitude, and aggression level vary day by day and sometimes hour by hour. She can be so sick one day and then the next day be okay again. Some days she is so mean and then other times she is nice. It is a big job to stay with her and answer her never ending questions but the few good days make the many bad days a little easier. I do have a feeling that tonight is going to be a long night.

Hospitals, Oxygen, and Needles, Oh My!

First I would like to say that I don’t think I will be participating in any more daily blogging challenges. Every time I do something big in my life happens and makes it to where I just can’t get to my blog. Now that things are a little bit back to normal I think I should be able to get back into my blogging grove.

I mentioned before that we were staying with my grandma because she was put on oxygen and could no longer be left alone. Well she ended up having to go into the hospital for a few days because she had gotten worse. When they released her from the hospital she just did not look good. She was in a lot of pain and crying all of the time. One night it got so bad that she asked us to call an ambulance to help her because she couldn’t handle the pain any more.

It turned out that she had multiple blood clots in both of her legs. It was so bad that she could barley move. You would think that they would have admitted her to the hospital, given her blood thinners and let her get better. No, they sent her home! They said to just give her an aspirin every day and put her on more pain medication. We reluctantly took her home and  a few days later had to call the ambulance again. This time when they said she could go home because she wasn’t sick enough to stay at the hospital, we knew that there was no way she was able to go home. They ended up sending her to a rehabilitation center. I really think that they saw an 83 year old woman who couldn’t move and was hurting all over and thought it was normal. My grandma isn’t like that. Until we had to put her on the oxygen she did everything. She walked around the mall, took out her own trash, made her bed every day and was very independent. Besides the memory problem she was doing very well.

At the rehabilitation center they started her on the blood thinners, did physical therapy with her, and made sure she was eating. She was so sick when she went in there that we thought she might not ever come out.

Thankfully we were wrong and she came home yesterday. They took her off of the oxygen because she no longer needs it, she can walk with the use of a walker, and other her legs hurting she is doing well. The only thing that isn’t great about her coming home is that the blood thinners she is on came in the form of an injection. So every morning I have to give her a shot in the stomach and she HATES needles. I gave her the first shot this morning and she was cooperative so we will see how it goes.

It has been a long process and I am so glad that she is back home. I hope that she continues to get better and stronger each day.

The Little Things

We came home today after spending 4 days with my grandma, I was never so happy to be home. Being away from home and having to walk on eggshells has really taken a toll on our family and helped me realize how important it is to live in the moment and appreciate the little things in life.

AJ was finally able to play and be a kid today. She could dump out her toys without being yelled at because she is too loud, and she wasn’t called a baby for playing with toys. (She is only 10) She could laugh and giggle and snuggle with me. She could go into the kitchen and get a drink without 20 questions about what she is doing and remarks about how she better not break anything.

I could finally have the fan on without a constant battle. I was able to COOK! Cooking has never really been something I liked to do and lately I have complained about having to cook and be in the kitchen all of the time. That being said, it was so nice to go into my kitchen and cook something without being yelled at because I might break something.

I have enjoyed playing with my dog and just relaxing. I am actually looking forward to cleaning up the house my way tomorrow. To be able to sleep in and make breakfast and not have to answer to anyone. I am looking forward to spending time with AJ tomorrow where she is treated like a person who has thoughts and opinions not just someone who is in the way and makes too much noise.  She is a great kid and I know that all of the issues going on with my grandma are hard on her as well. I hope we can have a few nice days.

Our freedom will only be short lived as we will have to go back to grandma’s on Sunday night, but I plan to enjoy the simple things in life while I can.

Grandma

Well today is the second day of the blog challenge. We have had quite a hectic day. We have had to stay with my grandmother because she had to be put on oxygen and she can’t be by herself. She is a very independent person and hates to be told what to do, but because she can’t remember what she is told we have to remind her things. I could deal with the bad memory, the millions of questions, and the old fashioned way of thinking, but the last two days have been hard. She doesn’t want to wear the oxygen and wants the heater on even though it is over 100 degrees out. She thinks AJ should just sit and be quiet all day, and doesn’t want anyone in her kitchen. Frustrated would definitely be an understatement! She keeps telling us that it is her house and she can do what she wants but because she has to have the oxygen on there are things such as cooking that she cannot do.

She doesn’t want to accept help but if she doesn’t she will end up in a nursing home, which no one wants to happen. I love my grandmother very much and want to help her as much as possible but I am kind of at a loss as of what to do. It isn’t fair to AJ to be expected to be a child who is seen and not heard. We are giving up our life, freedom, and all of our free time to take care of my grandmother and it is not being appreciated. In the last two days she has kicked me, tried throw a chair and glass at me and punched at me. I pray that God gives me the strength to continue to help her. Hopefully tomorrow will be a better day.

A Good Day

Our plans for Valentines day didn’t go exactly as we had planned. My mom wasn’t feeling too well so she slept in and we started our day off a little later than we wanted to. It started with me waking my little one up. She woke up on the right side of the bed and happily got in the shower. While she was taking her shower, I made breakfast. I made her red scrambled eggs, toast that said I love you and pink milk. She loved it. It was just little food color, but she thought it was the best breakfast ever. (I didn’t get any pictures) Then she got dressed and I fixed her hair for gymnastics. After everyone was ready we went to take care of my grandma. I was pleasantly surprised to see her in a good mood as well. We went through her mail and took care of a few things then we went to lunch.

Now I have been living with a corn allergy for a while, and have been watching everything that I eat but Thursday I made a mistake. We went to Joanne’s, a restaurant close to my grandma’s that we go to almost every week. I ordered a steak sandwich and didn’t think to ask for it on sour dough bread. I always ask for my sandwich on sour dough because I know I can eat it without being sick. The bad part is that once it arrived I still didn’t think anything of it and part way through the sandwich I realized my mistake. The sandwich came on a hogi type roll which must contain either baking powder (made from corn), corn syrup, or corn starch. I got so sick. Luckily I was ok after a while and or day went on.
Then we dropped grandma off and went to the gym. My little one was so excited to hand out her goodie bags.

 

Don’t you just love the glasses? She received so many complements on them.

 

She was at the gym from 3 to 6 and worked very hard. They have their first inner squad competition next Thursday so they are getting ready.

After gymnastics, we went to the Montclair Plaza and bought some SEES candy for my grandma. Then we ate dinner in the food court, and got a smoothie (corn free) on the way out. My little one told me it was the best Valentine’s Day ever. After that we did her grocery shopping and went back to my grandma’s. We didn’t get home until about 10pm. That’s pretty typical for our Thursdays.  So despite my mistake at lunch we had a nice day.

Valentines Day

Happy Valentines Day! When I was in school Valentines Day was one of my favorite days. I loved to fill out the little cards and hand them out to my friends. All day I would wait until the last hour of school when we would have the Valentines Day party. My little one never had that experience. She attended a regular school for kindergarten, first and second grade but they went year round. She was off track every February so there was never a Valentines day party at school. She always wanted to give out valentines so we would let her give them out at gymnastics. It has been a tradition for her to hand out cards at the gym and a few years ago she started handing out goody bags to her teammates. She looks forward to it every year and is always so excited. I am glad even though she goes to school at home that she is able to participate in Valentine’s fun.

This year I found a new facebook group called Homeschool Swapping Adventures. I am still very new to the group, but they do postcard exchanges, state box exchanges, pen pals and there was a Valentine Card exchange. I have to admit that after a Christmas Card exchange in another group I was not to sure about signing up to exchange Valentines. We had sent out over 30 Christmas cards and were suppose to receive that many in return, but only received about 6. I asked my little one if she wanted to participate, and she was excited. We looked online to get some ideas for a homemade card and after seeing so many we decided to use parts from a few different ones we saw. This is what she made. They are hard to read in the picture they say, “You are just write valentine”

She sent them to two little girls in West Virgina. Yesterday my little one received her cards in the mail along with two heart shaped cookies. She loves to get mail so that made her day. This is one facebook group that we will be sticking with.
We won’t be doing too much to celebrate today. I got my little one a small box of chocolates and a giant pencil with hearts on it. I found a cute bread stamper that stamps the words I love you when the bread is toasted. I am going to try that out for breakfast. We will be checking on grandma and then spending three hours at gymnastics. Thursdays are always busy. I hope that everyone has a wonderful Valentines Day!