The Gift that Made Alzheimer’s Easier

This Post Contains Affiliate LinksAlzheimer’s is a terrible disease. My grandma was in a very bad car accident back in 1999 and has had memory problems ever since. When you already have a bad memory it is hard to figure out when exactly Alzheimer’s starts. I would say she had the beginning stages about ten to twelve years ago. About six years ago her disease progressed and while she lived alone, we checked on her a lot. Often we would be at her house three or four times a week because she couldn’t turn the TV on or she lost her purse. About three years ago it became apparent that she needed someone with her at all times. She is now at the point where she doesn’t know any of us. Part of the time she doesn’t know her own name and she thinks she is between 5 and 18 years old.

She requires constant care. We cook for her, clean for her, do her laundry, shop, pay bills, change her diapers, and really do just about everything for her. The hard part is that sometimes she doesn’t realize that she needs help. She thinks she can do things by herself, but forgets what she is doing before she is done.

After figuring out the correct medications for her, her temper has gotten better for he most part. She still hits, kicks, and bites if she doesn’t get her way, but it is more controlled. In a way it is like dealing with a toddler who is a lot bigger. She constantly wants her mother and daddy and feels alone. Her puppy has made a big difference. She holds the puppy, loves on her, and talks to her. Even though the puppy had helped her mood, we needed something else to help keep her occupied. We tried to get her interested in puzzles and books, but she didn’t want anything to do with them. We also tried to have her keep her hands busy by folding washcloths. She didn’t like that either. Finally we found something that worked.

How a Doll Made Dealing With Alzheimer's Easier

We got her a doll.

She loved the baby doll. She holds it and kisses it. When it is cold she makes sure it has a blanket. The doll gave her something to do. She wasn’t constantly thinking about her parents and worrying, because she had a doll. That one doll has turned into four over the last two years. She also has a teddy bear and a stuffed lamb. We find her playing with them in her room. Sometimes she will make the bed and organize them all neatly. Other times she will take them all to bed with her.

The funny thing is that she knows they are hers. She asks for her little girl and the brother. It is amazing that something as simple as a doll could bring so much joy to an 87 year old woman. Grandma doesn’t remember much so our goal is to keep her as happy and healthy as possible. That $10 doll has made a big difference and I wish that we would have tried it sooner.

If you have a loved one who is suffering from Alzheimer’s a doll might help. Do you have any tips?

Bed Wetting and Dignity

One major part of our daily life is dealing with the side effects of my grandma’s Alzheimer’s. Along with the memory loss there are many other side effects that she experiences. Some are from the medications, and others are just part of this horrible disease. One issue we deal with at least weekly is bedwetting. It happens for a variety of reasons. Sometimes she doesn’t wake up, sometimes she is dizzy and can’t get to the bathroom fast enough, sometimes she doesn’t remember that she has to go, and a lot of the time she doesn’t know where she is or how to get to the bathroom.

Bed Wetting and Dignity - Maintaining Dignity when dealing with the side effects of Alzheimer's

Most of the time she acts like she doesn’t know why her bed is wet. Sometimes she will remake the bed in order to hide the fact that it is wet, and other times she will say she just spilled a glass of water. She has never admitted to wetting the bed, and I don’t know if that is because of her pride or because of the fact that she doesn’t know that she does it. I think it is a little bit of both.

Since bed wetting and midnight sheet changes are bound to happen, we have made some changes to make life a little easier in spite of the challenge. Here are six things that may make  bed wetting easier to deal with.

This post contains affiliate links.

  • Diapers – Grandma has been wearing adult diapers for over a year now. At first she refused to wear them, but now she usually will put them on without a fight. The problem is that they only hold so much and often they leak at night. We have found the Depends brand to be the most comfortable. They work wonders during the day, but unfortunately they leak a little too often at night. A major thing we have noticed is that calling them diapers will cause a problem. Not only does it make her feel badly about herself, but it makes her mad that she has to wear something that she doesn’t feel she needs. We call them pads. That way she can keep her dignity and we can ensure she wears what she needs.
  • Mattress Pad – When we first started staying with Grandma the accidents were few and far between. After the second time of having to shampoo her mattress we decided to get a plastic mattress protector. You really need the kind that go over the entire mattress and zip. The ones that go on like a fitted sheet can be easily removed…… I know from experience. The mattress protector can easily be wiped down with cleaner and makes shampooing a thing of the past. We wash down the mattress cover with a solution of cleaner and water and then spray it with Lysol.
  • 3 sets of sheets – Grandma may go 2 or 3 days with out an accident, and then wet through twice in one night. We have found that three sets of sheets works wonderfully. There is always at least one clean set, even if she wet through twice in the night.
  • White Sheets – Urine can have a very strong odor. We have found that sometimes the only way to get rid of the smell is with bleach. Having white sheets makes bleaching them simple. We had to throw away a few sets of colored sheets that became too stained.
  • Two Blankets – Two bed sized blankets really are essential. When the sheets get wet, the blanket may too. Often blankets can take a long time to dry, so having an extra available makes making the bed quickly possible.
  • Move the extras – Grandma likes her room to look neat, so a nice comforter is a must. The problem is that comforters are not made to be washed as often as sheets. The one that was on her bed for over 20 years finally had to be thrown away a few weeks ago from being washed so much in the last year. Now we take the comforter and extra pillows off of her side of the bed. They are within reach if she wants them, but having them get wet is a lot less likely.

Bed Wetting and Dignity - Maintaining Dignity when dealing with the side effects of Alzheimer's

Overall, patience, kindness, and understanding are the most important thing you can have when dealing with a bed wetter. There may be times when you have to wake up at two in the morning to change the bed. There will be times when you finally get to talk to someone on the phone, or the show you have been waiting for for months is finally on, and your loved one will need to be changed. Show them dignity. Show them grace, and show them love. Remember it is not something they can control. Just as you wouldn’t get mad at a baby for wetting through their diaper, don’t get mad at your loved one.

Caregiving is a difficult yet rewarding job, I hope what we have learned makes your experience a little easier.

Health Update – Mom, Grandma, and Me

I have had a lot of reviews on my blog lately, and unfortunately I haven’t had time to do too much other blogging, because as usual our life has been hectic. In my last real post I shared how my mom had been diagnosed with Kidney disease and had to have two different surgeries.

The surgeries were a lot harder on her than we were expecting. She woke up in so much pain that they decided to keep her in the hospital an extra night. When she came home she was still hurting. A few weeks later they took the two stints out of her kidneys and she started feeling better. Not good, but better. So far the test results show that her kidney function has improved a little, now we just have to play the waiting game.

This week she went in for another surgery to fix her hernia. To say she was nervous would be the understatement of the year. After all of the pain she felt from the kidney surgeries, she was really afraid of how bad she would hurt after this surgery.

When she woke up she was relieved. The pain was nowhere near as bad as the other surgery. But as the days have gone by it is very difficult for her to get up and down. Right now we are taking it day by day. With her back hurting from the kidney surgery and her front hurting from the hernia surgery, she is uncomfortable all of the time. Thankfully my aunt was able to stay with us a few days to keep an eye on Grandma and help out. I am not much help right now because my leg and back are getting worse by the day. I did finally get an appointment with another new doctor next week so I am hopeful that she will have some answers.

Daily Life caregiving

How is Grandma doing? She has her good days and bad days. Lately she has been is a better mood, our problem is her sleeping. She tends to be up for 48 hours straight at times and that can be difficult. I am the first to admit that when I am in pain (always) and don’t get enough sleep I am not the nicest person. Some days you will find us sleeping in until noon because Grandma didn’t go to bed until 5 or 6 in the morning. This of course messes up our school schedule, but we are about where I had wanted to be curriculum wise. Grandma has joined in on school a few times recently and even enjoyed writing on the chalkboard. Her favorite subject is our read aloud time.

Merry Christmas

Memory wise Grandma is a little worse. She seems to know us better and even calls us by name at times, but her sense of time is completely off. She tends to think she is about 10 years old. She is happy most of the time though especially this time of year when the house is decorated for Christmas. We have stopped telling her that her parents and husband have died unless she asks directly. We avoid answering as much as possible by using phrases like…. I haven’t seen her today, They won’t be picking you up tonight, and Yeah, your mother knows where you are. Since we made this little change she cries way less. She still has a mouth on her and wants things her way but life is a little easier. Health wise she is good and we are praying she stays that way!

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.