Happy Times

Watering flowers

Happy Times are Not Forgotten

I love Spring time. I hate pollen but I love Spring time. I love the flowers blooming and I love reclaiming my yard after ignoring it all winter. Saturday, we started planting pots around the yard in preparation for a wedding shower that will take place at my home in a few short days. We dug out the pots that had been stored over the fall and thankfully no slithering snakes had taken up residence in the stacked pots! Once every pot was planted, we stood back and admired our work as if we had just planted the beds at the Biltmore.

Now for the hard part . . . keeping all the beautiful flowers alive for what will soon be a hot summer. The first old hose I pulled out had a huge hole in it so off to the trash pile it went. Fortunately I remembered a nice heavy duty hose that I had relocated from Norman Drive (my parent’s house) back in the fall. It was perfect. No holes. It was nice and long and would be just right for watering the plants on the driveway and the side of the house leading to the porch. At the end of this study hose was a fancy nozzle. It really is fancy!

My dad loved to play in the water! Don’t all little boys like to play in the water? Dad purchased top of the line hoses while I picked up whatever I saw at Walmart. I did not look for a hose that would provide me with years of use but instead I bought a hose that was “a good deal.” Dad felt the same way about the nozzle. He bought a nozzle that did more than just stream the water from the hose to the desired flower pot. He bought a nozzle with at least 5 different spray features.

I will admit that I smiled as I untangled that hose and hooked it up to the faucet on the side of my house. My nose tingled as I smelled the smell of wet cement as I turned on the hose. In my mind I could see my dad playing in the water. He would hose off the driveway and the blue stone patio. He played in the water while enjoying the time outside.

It is the little things that make us happy. I get to enjoy little memories as I begin to use the treasures that I brought from my parents’ house to my house. Sunday, I will get to pull out three china patterns that I now have from my mom. I will get to tell the guest at the shower about how these plates belong to my mother and the yellow plates belonged to my dad’s mother. I will get to pull out serving platters that bear the name of great grandparents that I never knew. I will be watching to make sure that mimosa glasses are not putting rings on the drum table that belonged to my grandmother and now holds the pictures of my children in my living room. It is the little things that help me get through the sad times.

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Falling Down the Rabbit Hole

My mom has said on more than one occasion “I never imagined that this would happen to your father.” I think we all feel the same way. I think I feared cancer taking my parents more than I feared losing a parent to dementia.

But what can you do when you find that you are falling down the rabbit hole and landing right square in the middle of dementia? You can pray. You can find a support group. You can talk to one doctor after another. We have done all of these things and many many more.

Whatever you decide to do, please remember that you have to take care of yourself too. The disease will progress and life will go on. The merry-go-round never seems to stop. But if you do not take time to care of yourself and your family you will accomplish nothing. I have four children and a husband who also depend on me and I owe it to them to take care of myself. I need to be available to the family that actually lives in my house! You are not being selfish. You are simply taking care of yourself so that you can care for those around you.

I have to remember that if my dad did not have dementia he would expect me to prepare my older children for life at college. He would expect me to attend track meets and work concession stands. He would expect me to drop everything to go be with a daughter that is having a bad day in another city. He would expect me to help a daughter find a job at the end of her college career. This is not being selfish; this is called parenting and it is my most important job.

I will never forget when I was working at the bank one Saturday morning and my neck actually “popped” and my arm dropped to my side. I had ruptured a disc in my neck and would eventually need surgery. My husband took good care of me but my parents actually came home from their vacation in North Carolina to see what they could do to help me. Their friends actually asked my dad why they were coming home early to take care of me. After all, I was an adult with a capable husband by my side. My dad simply replied, “She is my daughter and she is hurt and I am going home to see what I can do to help.” That is love. That is parenting.

Sometimes you have to parent while falling down a rabbit hole!

Lost and Found

I Once Was Lost and Now Am Found:

When you are in the moment you are certain that you are the only one in the world going through this nightmare. A nightmare that you would never wish on anyone. And then you attend a boot camp or an engagement party or an office party and  realize that you are not alone. There are many strangers and friends walking the very same path.

In my opinion, the key to get through this nightmare is to talk about it with your new found friends. I do this at a support group that I attend whenever possible. The people in this support group are unbelievable. Some are three steps ahead of me on this journey and some are two steps behind me. All of us are trying to stay on the path. I find this support group to be very giving of their time and their knowledge.

So how do you go about finding a support group? I started with my computer. I googled “Alzheimer’s Support Groups in Birmingham, AL.”  Do not be afraid to google Alzheimer’s. My dad has dementia not Alzheimer’s but Alzheimer’s is merely a spoke under the dementia umbrella.

I found several sites that gave me useful information about dementia, as well as several support groups in the Birmingham area. Many of the support groups are located in local churches. I was able to find groups meeting on almost every day of the week . Some meet at night and some meet during the day. I was lucky and was able to find a group at the church I grew up in. I immediately hit it off with this group of people and my search for a support group ended shortly after it began. You might not be so lucky. You might have to try more than one group before you find the right fit for you. Do not become discouraged. There is a group just waiting to welcome you home.

You may also check with your local chapter Alzheimer’s chapter. The Alzheimer’s Chapter of Alabama has a wealth of information that they are just waiting to share. (http://alzca.org/)

I also find it helpful to read books on dementia. I have read parts of the book The 36 Hour Day. This book is a bit depressing so I chose not to read it from cover to cover. I did find some of the sections very helpful very early in my dad’s illness. I am currently reading Where the Light Gets In by Kimberly Williams Paisley. Her book is about her mother’s diagnosis of primary progressive aphasia, a rare form of dementia (another spoke of the dementia umbrella). Her book has reminded me that some people have a more difficult walk than others.

 

Do not lose sight of the person you love by focusing on the disease. Your loved one is still in there somewhere.

Suggested groups in Birmingham:

Collar Jewish Family Services.                  Briarwood Presbyterian Church

St. Mary’s episcopal church.                     Lake view estates in Hoover

Dawson Memorial Baptist Church.          First Baptist Church of Trussville

Canterbury Methodist Church.                Vestavia Methodist church

 

Feeling Small

No free advice here today. Just thoughts on a terrible moment in an otherwise beautiful day. It was my day to do the grocery shopping, a task that I loathe. It is bad enough that I have to do my own family grocery shopping each week but now for the past two years, I shop for my parents every other week. Fortunately my sister shops the weeks that I do not. Too bad I cannot get her to do my shopping as well.

Sometimes it is hard to find the time to shop and deliver the groceries to Brookdale but today, I managed to do both right after church. Quick run to the store then off to Brookdale. I walk in to find dad still dressed from church and sound asleep in his chair. The apartment is actually comfortable and not 101 degrees so I am happy to sit and visit after unloading the groceries.

I sat and had a nice visit with my parents while dad drifted off to sleep but waking up to ask me to “take him home” when I leave. Normally I would try to have an excuse or at the very least a quick comeback but today I simply smiled and told him that he was home. Everything he loved and needed was right there with him. All he could do is shake his head as I let him down once again by not taking him “home.” I changed the subject and prepared to leave thinking that I might be able to redirect him by letting him walk me to the door.This had actually worked before. I had already informed Roxanne, the sitter, that he was wanting to leave so she sprang to action and thought a little fresh air was in order.

We strolled down the hall and talked about little bits of nothing to pass the time. When we got to the front lobby we stopped to admire the beautiful flower arrangement prepared by Dorothy McDaniel. I leaned in to kiss him goodbye and assure him that I would return tomorrow with his tax return and he quickly sprang to life and reminded Roxanne that he was leaving with me! Think fast! Now what?

Roxanne tried to remind him that Mom would be sad if he did not return to the apartment but he insisted that I was taking him home. As he sees my car, I tell him to go to in the other direction. I hesitated to follow him and then dashed away to climb in my car before he could see that I was gone. The look on his face as I left was heartbreaking. He would never have left me and there I was leaving him standing on the sidewalk. It broke my heart. I am sure I felt this same way when I left a crying child with a babysitter years ago.

But I am hopeful that he will not remember this when I see him tomorrow. Hopefully he will be content to have another visit, sign his tax return and let me walk out the door without asking me to take him “home.”

It is amazing how one single event in an otherwise beautiful day can make you feel so small and alone.

No Rhyme or Reason

So there are more people on this unfortunate journey than I ever imagined. Some of my conversations today have led me to think back to the very beginning. Were there signs that we overlooked. Of course there were! Who wants to look at their parent and think they have dementia. I certainly did not want to see that in my dad.

Dad would drive to the village less than 3 miles from his house and when he returned home he would tell my mom that he could not remember where he was. My sister and I immediately said no more driving! But did we take the keys away. NOPE! Neither one of us wanted to take his keys away. So it must be a reaction to some medicine he was taking. We can alter his medicine and everything will be OK. Not exactly. My Mom said that he would only drive when she was in the car. Great, we are going to let him take the entire family out.

No one wants to take the keys away from a parent. Not only is it humiliating to my dad but we are thinking about the additional burden on us. My sister and I would not ride in the car with my dad and we would not let our children ride in the car with him, yet we were willing to put him in a car on the street where your children were playing! Not a great choice.

We slowly took away the opportunities for my dad to drive. The sitters drove to doctors appointments and we did the grocery shopping. We did hide his keys and we took my mom’s keys and put them out of his line of vision. Mom would spend “hours” looking for the keys that she knew were at my house. But this worked until we could come up with a better plan. This is how the lying began. The scary thing is we all got very good at lying. Good lies. Complex lies. So complex that we had a phone chain between me, my sister and my mom to keep the story going!

Bottom line. Take the keys away. Do it out of love. Do it out of fear but do it for your children and for ours.

The other early sign that we did not recognize occurred when we went out to dinner. My parents absolutely love to go out to dinner. They want drinks, crab claws, the fish special and maybe a shared dessert. So what changed?

Dad stopped ordering his usual meals. “I’ll just have what Thomas is having.” Problem was, Thomas was having salmon and dad doesn’t like salmon! It was only after hearing a speaker at the support group that we realized he could no longer read the menu. He could still read but a menu was too complicated. My parents still go out to dinner but my mom will talk about the things on the menu and often help him make a decision. You have to be careful. You do not want to appear to be reading him the menu. He is not a child. He is the head of the family and should still be treated with respect.

A few weeks ago we were given some great little cards to carry with us. These “business cards” explain that the person we are with suffers from dementia and may appear to be confused. These cards are from the Alzheimer’s Association but you could easily make them yourself. Remember not to talk about your family member as if they are not there. They are there. They hear you talk.

Do not focus on the disease or you will miss the person that is still there.

 

Good Friends & Good Information

I am blessed with good friends, Scratch that. I am blessed with GREAT friends. Friends that ask how my parents are and most of the time they really want to know! I have friends that I can call late at night to cry to and before you know it we are laughing. You HAVE TO LAUGH or you will cry all the time.

So here are some great facts that have been given to me over the journey. They are worth repeating so here you go:

  • Never ARGUE . . . instead, Agree
  • Never Reason . . . Instead, DIVERT
  • Never say “I told you” . . . Instead, REPEAT
  • Never SHAME. . . Instead, DISTRACT
  • Never LECTURE . . . Instead, DISTRACT
  • Never say “REMEMBER” . . . Instead, REMINISCE
  • Never think (S)HE WON’T . . . Instead, understand (S)HE CAN’T
  • Never COMMAND or DEMAND . . . Instead ASK or MODEL
  • Never CONDESCEND . . . Instead, ENCOURAGE and PRAISE
  • Never FORCE . . . Instead, REINFORCE

Never think you are alone in this journey. You will be amazed at how many of your friends are walking the same path. Find that person that will walk with you. In my case, it is my sister. THANK YOU GOD FOR GIVING ME A SISTER! We drink a lot of wine together!

 

Cleanliness Is Next To Godliness

rubber-duck-in-tub-clip-art_153195

It seems that bathing does not come naturally for anyone. If you are a parent then you remember bath time with your baby. Not once did that newborn hop in the bath tub, lather up with soap and declare they were clean and ready to start their day. Well, it seems that the same thing happens with a patient with dementia. I am not going to pretend that I understand this nor am I going to give you the key to solve this problem. What I can do is tell you what I have learned through reading, watching videos and attending a support group.

I am sure that you have noticed that the simplest task can become very complicated for a person with dementia. Think about all the steps that you have to do to take a shower: go in the bathroom, turn on the water and get the water temperature just right, take off your clothes, get in the shower (without following), locate the soap and lather up, locate the washcloth and scrub away, put the soap back in the soap dish, rinse off, put away the washcloth, turn off the water, get out of the shower (without falling), grab the towel, dry off, put the towel away and get dressed! WOW! That is a lot of steps. And to think we think a shower is relaxing.

So how do you make your loved one take a shower? We have tried many things. Some work and some don’t. Some work today and not tomorrow. Trial and error and as I mentioned earlier little white lies become very helpful.

My mom has told my dad that he needs to smell nice because they are going out or someone is coming over. Someone in our support group told the story of a retired nurse that had Alzheimer’s and the staff would tell her she had to make a presentation to the new nurses. Some have told their loved one that it is a community rule that everyone take a shower each day.

I have also been told that a person with dementia might be more likely to take a shower if someone is in the bathroom with them. This can be tricky with a small bathroom and you have to consider the person’s privacy. My parents live at Brookdale and the bathrooms are much smaller than their enormous bathroom at their house. I suggested that my mom tell dad to use the bathroom connected to their bedroom. The door has been removed from that bathroom so that my mom’s wheelchair can easily enter the bathroom. My dad can shower in the bathroom while she waits on him in the bedroom. That way she can look out for him and they can talk while he cleans up for the day.

Another thing to consider, do they really need a bath every day? Maybe and maybe not. You can also change the pattern for showering. I know that I said routines are important but if dad does not want to shower in the morning then try again in the afternoon or before bed. You just have to play it by ear.

BUT  . . . be sure they bathe at some point. My smart father has figured out that if he does not want to take a bath he can go in  the bathroom, close the door and the run the water without ever getting in! He is so smart! But we are onto him now!!