Medications and Mother

My mother is a very independent personality. Dementia visit to her house doesn't make it any easier to communicate or help her. She is also very kind and polite to guests and to those she does not see as a threat to her independence.

She recently had a bought of pneumonia. It came on very suddenly from a bronchial infection and we only learned of it because of the X-rays the doctor ordered. I was out of town when she became ill and even though my husband took her to see the doctor, she refused to allow him to go in for her prescribed x-rays. By the time we actually talked her into going she was not well and of course, the x-rays showed pneumonia in her lung's lower lobes. She was put on more medicine that she faithfully took.

But this brings up a very valid and good point. She obviously didn't feel well when she had my husband take her to see the doctor, and being a retired nurse she would have known that the coughing and the congestion signaled a serious infection. Why did she refuse to get an x-ray? In order to get her to go in for one, I actually had to call the doctor's secretary 1.5 weeks after it was ordered and tell her that mother was refusing to go in. "I don't feel well," or "it's too hot outside to go anywhere." She had plenty of reasons. But when the doctor's secretary called and told her they had not received the results from her x-ray, she decided she should comply.

So this brings me to the bigger point: If she would refuse to go in for a needed x-ray would she also refuse to take her medications on a daily basis? Because of mother's fierce independence, she has never allowed me privy to her medication list. She guards them. As I said she is very private. The admissions nurse to the Home Health Care Company we are currently using suggested that because she had three different locations in the house where she keeps her medications, it is highly probable that she is not taking all of her medications.

Today when the visiting nurse was there I spoke privately with her about the medications issue. She offered to help by bringing a medication box on her next visit and helping to get all of her medications in one place. She suggested that I allow the nurse to do this as my mother might see my involvement as an attempt to take her independence from her. After the routine is established I can become more involved in helping her load the medications into the daily pill dispenser.

Again this is the "give and take" of dementia. We have to play a game with dementia as to who is in charge. Dementia must believe it is. As a retired nurse, my mother respects the medical profession and will after a bit of a fuss allow the nurses to do their jobs. She will not do the same for me. Even though I am her loving daughter, she has a fear that I will take her independence from her. The insanity of dementia is that it confuses all of the emotional bonds that families used to comfortably share.

I am thankful for the nurses who will help to establish healthy routines as we begin to set up for the onset of dementias darker days. I am thankful for my mother's willingness to listen to someone other than me. And for allowing me to remain in the main role as her daughter.

Today was a good day. She endured her physical therapist and nurses visit with mirth and a good spirit. Characteristic of her personality she cracked jokes with the nurse and shared a lighter side of her good nature. She was grateful for her new plants and had worked hard the night before to put them into the ground before the rains came. She wanted very badly to go out this afternoon after her nap but called me to say she was too tired to venture out.

I have wasted a great deal of energy believing that she was being mean to me when she would change her mind on a dime. I don't think I have taken the necessary time to consider what it must be like for her. She is scared. She is lonely. She is confused. And she is tired. Her anxiety overwhelms her sometimes and the thought of going out of her comfortable house is too much.

In class we discussed how simplification is paramount. Dementia sees the world as a chaotic place where noise and colored patterns confuse. Mother used to love to go to church and sing her heart out, but now she can not muster the courage to sit in a crowd of people with foreign smells, colors, and loud sounds. It wears her out. I have offered numerous times to take her to her church. It always is the same. She says yes she would like to go. She gets excited about going and pin curls her hair, picks out a dress and then on Sunday morning refuses to leave the house.

I am grateful for what dementia has not yet taken from me. I am grateful that today I had a good long hug with my mother and that she knows I love her. It made me happy to see that she had the energy to walk about and to plant the plants and enjoy the world one more day.

A giving kind of day verses Power Struggle

On Monday's I attend the Dementia Dialogue class that I spoke of in my last post. The weekend had not gone as hoped. I am having to let go of expectations. So when I showed up to my class I had a few questions and thankfully I received many good answers.

The one thing that has defined my mother and my relationship since the beginning of this disease is the power struggle. It's not something I ever intended but not knowing what I was dealing with it happened. I feel like I know better now and we are moving forward.

I am at the stage of my life where life moves pretty fast so organization and efficiency are key to making it all balance. Let's just say that dementia doesn't really care for organization or efficiency. Dementia changes it's mind on a dime, with no rational explanations. Dementia cares not for my time table or my to-do list. So when my mother was diagnosed and we began to understand what we were going to be dealing with, I was like no problem we will just make a list and get it done.

Not so fast. It's not my disease. I don't own it. Nobody owns it at this point but that is another topic for discussion on another day.  I have always respected my mother's privacy and her wishes so approaching the list became an object of frustration.

A good example would be the air conditioner. She is aware that my brother and I would like for her to keep her new, temperature controlled window air conditioner on at all times. It saves energy, it keeps the house cool, and we don't have to worry about her having a heat stroke while sitting inside the house. She could not get it in her head to keep it on. I would arrive and find the temperature in the house near 90 and her with three fans blowing. I would turn it on. She would turn it off when I left.
The cycle repeated itself daily. Once after my brother gave a talking to her she decided to comply to make him happy, so that when I arrived the air conditioner was on, but all of the windows and the door were open to the outside. Why??

I learned why? Dementia patient's core temperature is lower than ours. They are colder by nature so having the air conditioner on made her believe she was colder, even if her physical body thought otherwise and was sweating.  But we had a temperature controlled unit that all she had to do was adjust the temperature, up or down to her liking. It was such a new concept that she could not learn it. Dementia patients have a really hard time learning new skills.

I mentioned this situation in class and we talked about it. I was told the solution was not to have a power struggle with her. BUT, I replied she is putting herself in danger and I am worried about her physical health. The solution was to turn the air conditioner on when I visit and turn the temperature down low for as long as I am there. When she turns it off after I leave, the room temperature will balance out and we have not ruined our relationship over a power struggle. I would not have thought of this on my own. Thank you Dementia Dialogue Class.

The real joy that came was when I learned of her need for a shower chair. She has at high risk for falls around her home and I am trying to minimize this risk. I knew that if I showed up with a shower chair she would fight me and even have me take it back. She did this on a few other items I offered.

So in class, I learned a few very helpful things:

• Our relationship has changed. Dementia has my mother. I need to take charge and not ask.
• But not asking does not mean I am not kind in my approach. Honey goes much farther than salt. 
• Decisions overwhelm those with dementia. Giving simple choices and direction is key. 
• Dementia robs a person of rational thought so even if you give a plausible explanation as to why a shower chair is a good idea, dementia won't see it that way. 
• Dementia does not see the danger or the risk

I knew that my mother needed a shower chair. The subject had come up several times before. The physical therapists had suggested it, but mother had always dogmatically refused it. She didn't need it and she didn't want it. That was made very clear. So how was I going to get her to accept one? 

Honey. I went to Home Depot where I purchased her a tomato plant, a bell pepper plant, and some flowers for her very small garden. This was a great idea because it gave her purpose and she was very pleased with the gifts. I also stopped at Chick Fil A and purchased her evening meal. She loved this the most. She is able to cook for herself still, but I know she grows tired of it. She loves it when I surprise her with a restaurant meal. 

After she had thanked me for all of her surprises and after I was sure she was in a good mood, I brought out the shower chair. 

"What is that?" she asked rather perturbed. And, "Who told you to buy that?"

"Well mother," I explained, "your physical therapist requested that you have it in your shower to give you a place to sit. I chose the one without the back because I thought you would like it best." 

"This too shall pass."  She began reciting verses to quell her anxiety. 

"Can I have a flat head screwdriver? I need it to put this together." 

She found one and watched me quickly put it together. Her attention was on its assembly now. 

"God grant me the serenity to accept the things that I cannot change." 

I watched her as I screwed the screws tightly into the underside of the seat. She was visibly upset but didn't want to say so because I had brought her food and flowers. 

When I was finished we took it to the shower and she decided it was okay. She was happy after all.

Whew, I felt like I had dodged a bullet. I found a way around her mood swings and need to control what she can't understand. Afterward, we sat and talked about her needing some new clothes and when was I going to take her shopping. And that is yet another story to be told.

Dialogues

Dementia is an unwanted guest in my life. There are days when it roars and screams and sends me cowering to a safe place and then there are days when I barely know it's there. I'm not speaking of me. I am the caregiver to my elderly mother who was very recently diagnosed with it but does not know it. That is a subject I will address in another post.

I don't want to relive the difficulties that we went through before getting a handle on this insidious disease that turns everyday life into something like a trapeze act at the circus. I want more to be there for others who might not have a handle - and I'm not pretending that I do - on what having this disease lurking about means to my life, my mother's life, or my families life.

I am a seeker. I always have been. So when I am faced with a challenge, I learn everything I can about it and then share it. It brings me joy to think that someone else might not have to go through what I did because I chose not to keep all of my experiences to myself.

Let's begin with the word dialogue.  Dialogues are discussions meant to unravel the problems we all face. They occur in plays and books and just about any place where clarity is needed, but mostly they are between friends who need help unraveling deep-felt emotion. I have a dear sister in law who has been my sounding board as our family has begun this journey. I believe having a good friend or family member who will take the time to listen as you seek to find answers to dementias perplexities is essential to this journey.

Dementia is a disease that shows its face on any given day. It does not know the calendar. It does not know your loved one either. It comes and takes your loved one from you. It changes everything.

I was not prepared for this journey. I knew it was coming and we moved closer to my mother's home to make our lives easier, but I can say I was not prepared for the personality, relationship, and physical changes it would bring to my mother's life. I feel like I am playing catch up and then I learn about families that have had it in their lives for years. I was dumbstruck at the idea that people can learn to handle such an unpredictable and unchartable disease.

So. This blog is really a selfish thing to help me. And hopefully, someone else will find answers or links to answers that will help them. Also, hopefully, others will reach out and share their experiences and help me prepare for the much more difficult times I am reading and learning about. I realize that every person's experience with dementia is uniquely their own, but I also realize that there is much to be gleaned from sharing our experiences.

I decided to write this blog after attending a "Dementia Dialogue" class. After my first class, I sat in the car and bawled for several minutes and then I went shopping. Retail therapy you know. Well, I can't do that everytime I become overwhelmed with what is coming down the pipe, so I decided to do what I know, write it out.

I'm not sure where this journey will take me, but I know that if I can express myself and that if believe others are listening then I will be okay.  And most importantly it will give me methods to help me deal with my mother's irrational behavior in a positive way.

I hope to learn how to give when the disease does nothing but take. I hope to learn to not take my mother's behavior personally. I hope to take information from the class and then give it to others. And mostly I hope to learn to give in such a way that the journey becomes joyful as I learn to accept the unexpected surprises of mirth and love that have always defined my mother.