Our week with Joyce

First of all I am soooooo proud of my husband. This week his love, care and tolerance for family really out shined the sadness that we observed.

Note: this post will contain very personal and sensitive information. But my hope is to provide a record for us and awareness for others.

Alzheimers. It is a family condition that plagues family lines on Tim's maternal side. It is a mysterious disease that takes away the ability to live before your body dies.

Joyce is now 80 and has lived with assistance for 5+ years. Unfortunately her condition is continuing to steel her skills of every day living and causes great confusion or absence of knowledge.

Now it is common knowledge that care is given best through someone with direct connection = FAMILY. Additionally it is common knowledge that no one can do it alone, meaning utilize your resources and find an experienced aid/specialist.

Tim really tried to care for ALL of Joyce's needs for a whole week. The love and respect he possesses for his parents and Joyce really helped him to follow through with all the tasks. Yes, that means he completed all the personal hygiene stuff. He was scared. It was hard, emotionally. And he probably wouldn't have accepted the request to care for her for the whole week if he was given all the information ahead of time. But he did!!

Handling the meals was a sinch for Tim. Although, he now realizes that is not the case for other family members that are charged with providing her meals. This lady can eat. And Tim was more then happy to provide for and make the meals. I was able to take part in eating!! and seeing the enjoyment and satisfaction from the meals. Unfortunately Joyce's regular diet does not meet these qualities. Additionally I provided the coveted daily chocolate treat. Why not...!

Day time activities: Well there is no TV. Little to no skill to make decision on her own. No comfortable location to nap, with consideration to her preferences. No use of kitchen- its off limits- the likely hood of kitchen use does increase safety issues. Currently Joyce is able to play the piano, read, pace, have a daily walk outside, pet the cats, observe and tolerate young children living in the home. She also socializes but that is specifically dependent on whom there is to talk to.

Physically: Her current condition gives her full function. Meaning she has full use of feet, legs, arms, and hands. Gross Motor Skills are still exercised and encouraged, walking, reaching, standing, sitting, bending down-- though her coordination is weak. Fine Motor Skills requires more patience and focus. She seems to regularly play piano, turn pages, write and display facial expressions.

Cognition: Memory skills, it is obviously poor, but so what. What ever memory/information that is relayed should be encouraged, even if it is not accurate. Recognition skills, she needs assistance sometimes/most of the time. She still knows her children! And with assistance she is familiar with basic math and need assistance jigsaw puzzles. She can also follow direct conversation and understand simple humor.

Communication: Her ability to communicate is very weak. She does enjoy socializing, in spurts. She also is not carrying the conversation but she does participate in it. When asked she was not able to mention any wants without prompting. But she was able respond to what made her happy for that day.

Emotions: Emotions are related to her ability to communicate and recognize. She is weak in this area. She can not verbalize all of her emotions but on a simple scale she can still try with prompting. She is connecting emotions to experiences, though not all the time. Her emotions are also connected to her comfort level. While we were there she often displayed positive joyful moments. This was demonstrated by laughter, smiles, relaxed shoulders, positive verbal feedback, and playfulness.

Support: She receives family support externally through very few calls, visits, and trips. Though this has more to do with others willingness/ability. But her primary source for care is directly from family. This is nice, but will always bring issue of past/new roles.

With all that said it is pretty obvious that she can benefit from more daily stimulation. Especially since she is more active.

The most heart ache that we incurred with Joyce occurred during sleeping hours. Apparently due to wandering, safety precautions have been accommodated with a bedroom door lock. Yeiks!

Tim was definitely not informed of that prior to this experience.

Initally, Tim followed parent instructions. Not too soon after did he come to realize how WRONG this precaution is. It was startling and sad to see the effects on Joyce. 4:00-6:30 AM on different days we were awaken by frantic banging on her bedroom door, which is the only bedroom downstairs. She was very upset, scared, and stressed at the door being locked. After being calmed Tim resolved to not lock the door and sleep on the couch in the living room. For the next few days the couch is where he slept till we left.

Since being put in this situation we have had to question the ethical issue. To us it is a very big issue to lock a human being in a room. Especially when the one being locked in is innocent and or frail; and the people doing the locking have the cognitive and physical control. There is absolutely NO reason for anyone to be locked in a room. People who do the locking have serious control and selfishness issues. There are always alternative adaptations that people can take. The question is will they sacrifice or will they make it most convenient for them/situation.

I admit that in the heat of this issue I jumped straight to the laws of the state. Not to slap it as a lawsuit but to determine definitions, seriousness, and awareness. I immediately convinced myself that the law backs up my beliefs. Though our argument is strong we later realized that the validity is very weak (That is REALLY sad). End result we want is for change and appropriate accommodation to the need. So Tim wrote a letter about it to his parents.

Unfortunately, he was met with the typical response of what you said hurts us and things will not change. Well the real unfortunate thing is that the letter did not find the outcome we had hoped for. Although there is always hope for the future.

Overall this whole experience was an eye opener. We empathise for Joyce and pray that she can enjoy the rest of her days. However long that may be. We were honored to provide care and love to her. She had always been extra nice to Tim growing up and for that I am appreciative.