When a Boyfriend is Not Really a Boyfriend

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Sometimes a boyfriend is not really a boyfriend.

I have said before that my dad often thinks that my mom has a boyfriend. She has been told that she should be flattered that he thinks she “has what it takes” to get a boyfriend. But after more than 50 years of marriage, my mom does not want the love of her life to think that she has a boyfriend.

Several weeks ago when we had a chance to meet with Teepa Snow, we asked Teepa why my dad would think that my mom has a boyfriend. She gave us an explanation and I am going to do my very best to explain her answer.

Over fifty years ago my parents entered a marriage as equals. They said their marriage vows and agreed to love and cherish each other for the rest of their lives. They agreed to be partners. Equals. They walked through life making decisions together. Their lives were filled with happy times and sad times and much discussions in between.

Now my dad has dementia and things have changed. They are no longer equals. They are still husband and wife but they are not equals. Mom is now the leader. She is the decision maker, the caregiver, the one we call to discuss matters that we once called dad to discuss.

Teepa used her fingers to describe the relationship. When you are single, you are the pointer finger. When you marry, your partner become the middle finger. Feel free to chuckle here. Your partner is not really the middle finger but in this example they are. Now, put those two fingers side by side and they will act as one. They go everywhere together and do everything together.

Now imagine that one finger has dementia. The fingers separate slightly so that one finger can lead the other. Care for the other. The relationship has now changed. They are no longer equals so something must be different.

This is surely how things are with my parents. Dad may have dementia but he recognizes that the relationship has changed. To my dad, this change must mean that my mom has a boyfriend.

Unfortunately, we still cannot convince my dad that mom is not cheating on him but it is easier for the rest of us to understand.

Sometimes a boyfriend is not really a boyfriend.

 

 

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Who Is On Your Team?

k15505690I count myself lucky that my dad is such a wise man. He always wants to make sure that his family is taken care of and he has certainly done that.

Now I have the privilege of paying his bills and making sure that his financial record are in order. Remember, this retired banker worked hard to keep his books in order; often by using a creative method of record keeping. He taught both of his daughters how to keep a ledger!

Two weeks ago when I had the pleasure of listening to Teepa Snow she talked about the financial side of dementia. Did you know that dementia is the third most expensive disease in this country?! Number one and two are head injuries and cancer, respectively.

The good news about number one and two is that insurance will kick in and help pay for these medical treatments. I am in no way saying you would want a family member to have a head injury or cancer. I have seen both and both are heart wrenching health issues and I am so thankful that insurance will help cure and fight these matters. I would also like to say that I cannot speak to either a head injury or cancer first hand and I am very thankful for that. But I can speak to the diagnosis of dementia.

My dad was given the diagnosis of dementia in the summer of 2015. Once you receive that diagnosis, there is not a medical treatment plan. There is not a percentage rate of those that have had dementia before you and have been cured. You just get a diagnosis and a sympathetic look from the medical professional. They are sorry for the patient and sorry for the care giver.

So now what do you do?

Teepa Snow told us that you build your “team.” Awesome, a team. A team of what? Do we get matching jerseys? Will we have a team practice before we are called into action. Yes and No. No, team jersey but if it makes you feel better,  go for it! And just in case you were wondering, everyday is practice. All day long, every day.

Our “team” is made up of an internist, a neurologist, my mom, my sister, several sitters and some close friends. Early on we had some doctors on our team that we had to fire. This “team” is not an appointment for life. If you do not carry your load, we will vote you off the island!

Some “teams” may include an elder care lawyer. If you are not in the same city as your loved one or you do not have a relationship with other family members on your “team,” then an elder care lawyer might be a good move for you. Be sure to interview this person just as you would interview anyone else you are trusting to make wise decisions for your family.

Due to the high cost that are involved in caring for a person with dementia, 70-75% end up on Medicaid.  My parents are lucky to have resources and they do have insurance and Medicare, however you can drown in the paperwork that floods your mailbox. I am so very glad that my dad was able to read the volumes of information that his insurance company provided him years ago. I am lucky that I can just post the debits in his ledger each month and know that their medical bills are taken care of.

I will tell you that I truly believe that the number one goal of Medicare is to wear you down. Make you give up and walk away. I am here to tell you to hang in there! Do not walk away. Be persistent. Remember that your mother told you to always be nice . . . first! Then shift gears and let them know that you are an immovable object. They might as well deal with you because you are not going anywhere!

It took us at least four months to complete all the paperwork necessary to get my mom’s first electronic wheelchair. My mother will tell you that it was a piece of junk. My sister and I will tell you that part of the problem was from operator error! Some door frames just will NOT move, no matter how many times you run into them!

My dad is still mobile and he has a collection of canes to assist him. However, we were able to get a prescription from his doctor for a walker to assist him on bad days. He has a scooter that will flat-out move! I will be honest and say that I do not remember if the scooter was covered by insurance but it does not really matter. That red scooter brought the biggest smile to dad’s face! It was like receiving a shiny new red bike on Christmas Day. Totally worth whatever we paid.

But, that is the extent of what insurance will pay for. Insurance does not cover the round the clock care we have for my parents. Insurance will not cover a room in the memory care unit should it ever be needed. Assisted living and memory care rooms are unbelievably expensive. I can tell you that a memory care room for my dad would cost an additional $7,000 a month. This is not covered by Blue Cross Blue Shield.

Some people have long-term disability insurance. Most do not. This is an expensive disease. This is a disease that can go on for many many years.

Bottom line: Our healthcare is behind the curve when it comes to dementia. According to Teepa, Canada has better resources than the US. Many times the focus on healthcare for senior citizens is on prevention of diseases or living with a disease, not curing demintia. We need to reevaluate what dementia is and how we deal with the disease.

One out of five families will be faced with some sort of dementia. Do you know who would be on your team?

 

 

 

A Sunset Ride

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I have said many times that this journey is cruel and so totally unexpected. However, the people I have met on this journey are AMAZING.

I am always surprised that there are so many of us on this journey. I have high school friends, church friends, college friends and then there are the wonderful new friends that I have made at the support group I attend. Valerie, our fearless leader, reminded us that we started meeting last Fall with around 7-8 members. Today, I sat in a room with close to 20 caregivers. We are all in different places on our walk but we are all together for the same reason. We are there because we love someone with dementia and from time to time we need to be propped up along the way.

Our group had the privilege of meeting with Teepa Snow last Friday before she spoke at the Beeson Forum on Saturday. If you missed my previous post, you may not be aware that Teepa is the dementia guru. She has the ability to take a terrible disease and make us laugh at our situation. She answered our questions; like why does my dad think my mom has a boyfriend? She walked us through emotional situations; like moving a parent from their home in one city to an assisted living community in another city. She is amazing!

Did you know that one out of five families will be touched by dementia? That is a staggering number to me. None of us think that we will be faced with this disease. We all picture ourselves riding off into the sunset with our partner. Unfortunately, everyone does not get this privilege.

On Friday, we learned that some of our new friends were still getting use to the idea of a loved one’s diagnosis. None of us ever want to accept the idea of dementia or Alzheimer’s but the diagnosis is still quite raw to some. We listened to their stories and we weep with them. We remember our own family member’s story.

Teepa told us there were 5 stages we would pass through after we received our loved one’s diagnosis. The first is DENIAL. This one is easy to understand. No one wants to accept the fact that our father/husband/wife/daughter is slipping away. The second is ANGER. Yep! I understand this one too. I sat in my car in my garage in December and cried because I  could not stand to think that one day my dad would not know me. Anger is easy and it can go on and on. The third step is BARGAIN WITH IT. This is sort of like a prayer that we have likely all prayed before. It goes something like this: PLEASE, PLEASE, PLEASE let my ____. If we could bargain this disease away, who would we give it to? We would not wish this disease on anyone! The fourth step is SORROW. We feel sorry for ourselves and our loved one. We mourn the life we will not have together. We mourn the loss of our ride into the sunset. The fifth stage is LET IT GO. We have accepted the diagnosis and we know that we cannot bargain it away and we must live with the diagnosis. We must face the fact that we do not get to ride into the sunset. We have to let it go and find the joy where we are. We have to let it go.

Now that we are all humming the theme song from the movie Frozen, it is hard to LET IT GO. It is hard to accept the diagnosis. Valerie is always handing out information to help our group on our journey. Today she shared a story that was forwarded to her.

The point of the story is that God has written our story and none of us know what God has planned for us. God is still writing my dad’s story. God is still writing my story.

As the story said, We don’t know another until we see him/her as part of God’s Story. God’s Story simply will not fit neatly into any of our categories – medical, religion, doctrinal, cultural, political, or otherwise!

My dad’s story is not being written the way I would want it to be written but it is His story and I know that it will be a good story because he is a great man.

It’s OK to Have a Pity Party

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Sometimes you just have to have a pity party and invite all your friends.

Dad has had a rough week which in turn means that my mom has had a difficult week. It is heartbreaking to watch Dad remember that his mom (my grandmother) is dead. It is as if he just learned this news for the first time. He has been crying for days. And as I told my husband, it is an ugly cry. A full on heart breaking cry.

Mom has been experiencing this cry for days. He just sits in his chair and weeps. Today I stopped by with my son and we had a quick visit with my parents. Dad looked up at me and told me that we needed to clean out his mother’s apartment, as well as his sister’s apartment. He told me they had both died and asked me what we should do with their belongings?

I know that I should play along but once again this is a tough topic to spin; so instead, I told him that they had died several years ago. He was stunned. I told him that he planned a wonderful funeral for his mother. I told him that the flowers were beautiful and that everything was just perfect. He said he did not remember the funeral. I tried to lighten the mood with a little story.

I told him that I had a favorite memory about the hours before the funeral with all of my cousins. We sat in my grandmother’s den and waited for our parents’ to tell us it was time to go. I am pretty sure I was the youngest of the cousins at the age of 23. As we waited on our instructions the “aunts” started stopping by the den one at a time and telling us to go to the bathroom. There is no bathroom at the cemetery. We finally told the last aunt that we had all been to the bathroom and were ready to go. The funeral was on a miserably hot day. Probably a lot like today. The grandson’s were the pallbearers and by the time the graveside funeral was over one cousin was covered in perspiration. His poplin suit was drenched. My father told him after the funeral that he should have gone to the bathroom before we left! Of course we thought that was hysterical. A light moment on a sad day.

It worked! Dad laughed out loud and for just a moment he stopped crying. But only for a moment. By the time I left, he was crying again.

My mom was left to pick up the pieces even though it was a unsermountable task. One that she had been trying to survive for the past four days.

So what do you do when your dad announces each day that he just found out that his mother, sister and brother are all dead? One of our kind sitters took Dad to the cemetery and showed him the gravestones. My sister has done the same thing and she even thought to take pictures of the gravestones so that we could show him on days like today.

Unfortunately, he will likely learn tomorrow that his mom and his siblings are dead. He will learn this news as if it was for the first time. My Mom will assure him that he honored his family with beautiful services. She might pull out the pictures and point out the date of their death. He might remember and move on from the sadness but more likely, she will have to tell him the same news again tomorrow.

It is hard and someone should have a pity party.

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I like to share helpful information that I have learned on this journey. This week, I had the pleasure of joining several other women at a luncheon to honor Suzanne Blankenship. Suzanne wrote a book entitled How to take care of old people without losing your marbles. I highly recommend that you order this book. I received mine as a gift but I bet you can order it on Amazon. It would have been very helpful to me last summer! It is an easy read and very informative. If you have aging parents, you will need this book.