Further Progression; Sorrow Mixed with Moments of Joy

I don't know how else to say it. It's so incredibly sad. Some days it hits me harder than others. The last week or so has been especially difficult.

I have updated the progression of dementia page, which you can read by clicking here. There are more changes of course, but it just seems to be happening all too fast. I'm just not ready to let him go.

I look at him and see how precious and how vulnerable he is, relying on the good will of others to look after him and take care of his every need.

I had my yearly physical with Dr. S. last week. It brought back memories of how two years ago she saw Jim for the first time.  It's a vivid reminder of how he went so quickly from the moderate stage to where he is today, at the end stage of dementia.

Jim is profoundly tired these days. He sleeps well at night. He takes a nap between breakfast and lunch at my request. I always hope that he will be rested enough to stay awake for lunch and for the afternoon. But lately he has been falling asleep right after lunch. He is not on any medications that could be causing this; apparently it is simply the progression of the dementia.

Sometimes while he is sleeping I lay on the bed next to him with his head resting on my chest. It's incredibly beautiful. I look at him and it almost feels normal. He doesn't look any different; he is still my very handsome, loving husband whom I adore. For brief moments I can almost pretend we are at home in our own bed, snuggling together like we used to.

And sometimes he opens his eyes, he smiles at me and snuggles in even closer, making a contented sound of "hmmmm". How sweet is that.... So in spite of my deep sorrow, I still have these incredibly beautiful moments that I will cherish forever.

I found an interesting website  that offers a description of the later stage of dementia. It's not much different from Fisher's stages, but it does mention a study where brain scans of meditating monks were found to be similar to those in end stage dementia. The contentment and peacefulness that Jim seems to be experiencing at this stage correlates with this finding.

The vacant look in his eyes is more frequent. It is almost as if he is looking right through me. It's not all the time of course, but more often than it used to be. It brings to mind that I must remember and cherish these moments when we do connect, so that I will always have that in my memory.

I received a lovely email from a reader recently, thanking me for my blog. Her dad has dementia, and she and her mom have been helped by reading through the different posts. What a lovely recognition! It made my day.

Thanks for stopping by. I so appreciate each one of my readers.

Memory Care Unit; Things that Might be Helpful to Know

While most of our experiences at the memory care unit have been positive, there have been a few bumps in the road. Not totally unexpected given the challenges of providing care for 40 residents with dementia. Regular readers will remember over a year ago, when the physician lowered Jim's citalopram without consulting with me first. Jim's agitation increased dramatically, he had trouble sleeping, and lost his appetite. You can read about it here. Things stabilized once his usual dose was resumed. But I remember only too well the frustration of this experience. Worst of all, Jim suffered mightily. He was inconsolable during this period.

Fast forward to today. I learned yesterday that this occurred with another resident just recently. Her decline was even more dramatic than Jim's. Family is, of course, very upset. I was able to share with Ilene (daughter) about the GDR (Gradual Dose Reduction) policy as mandated by the federal and state government. We commiserated about our frustration and decided to do something about it.

Together, Ilene and I are developing a welcome packet for new family members that includes information about GDR and other basic, helpful information about our unit. When I look back on our first couple of weeks here, I remember feeling totally overwhelmed. I always make an effort to reach out to new family members, but perhaps putting something in writing would be helpful too.

Ilene created a form to document a GDR; it is filled out by the nurse manager and is signed by the physician, the nurse and the family member prior to the medication change. This way family members are aware right from the beginning, they know that they have a right to refuse this change, and are able  to monitor for changes if the medication is decreased.

While we are still working on the GDR form, I want to share with you the welcoming letter that I created; it covers some helpful tips for newcomers. While the specifics for memory care units are different, a lot of the basic concepts will be the same.

Welcome to the Memory Care Unit

There are many challenges facing us when the decision is made to place our family member in memory care. We hope that this information will help with the transition. 

• Be sure to reach out to other family members for any questions that you may have. You’ll find that we are well connected and we support each other on this difficult journey of dementia. We’re a friendly group and we often feel like one big family. As you get to know the residents and family members, you’ll find that our caring spills over to all the residents on this unit.

• Be sure to introduce yourself to the staff. Socorro is the Nurse Manager and Tifanie is the lead LPN. RN uniforms are royal blue, LPN uniforms are light blue, and CNA uniforms are navy blue. There is a daily posted schedule in the office that shows which CNA is responsible for the care of your family member. 

• Structured activities are offered each day. The schedule for the activities is posted on the white board just as you enter the unit. The activity leaders are caring and experienced in working with folks with dementia. The activities provide an opportunity for folks to socialize with each other as well as to participate in different activities. You’ll find everything from Bingo, to Happy Hour (non-alcoholic beer and wine), to seasonal celebrations. 

• There are plenty of beverages and snacks available at all times on the unit. Ask a staff person or a family member where to find the goodies. Kate is the dietician for our unit (maroon top). You'll often see her on the floor at lunch time.She is very happy to work with  you to make sure dietary needs and preferences are met. There are always two alternatives at each meal, and other options are available also, if needed.

• If needed, physical, occupational and speech therapy are provided.

• Family council meetings are held occasionally. Usually there is a mailing or a notice at the front desk giving notice when the next one will be held. These meetings are for questions and concerns specific to the unit, but not specific to an individual resident. We are encouraged to start with the nurse manager for concerns specific to one person.

• Occasionally there are untoward events, such as falls or a change in health status. If you wish to be notified of these events when they occur, be sure to let the Nurse Manager know. 

• You may wish to review the plan of care on a regular basis. This will provide you with information on the specifics of the care and level of assistance needed for your family member.

• Sometimes medication changes are made. If you wish to be notified before medications are changed, be sure to let the Nurse Manager know. CMS (Centers for Medicare and Medicaid Services) regulations require attempts to gradually reduce the dose of certain medications. This includes anti-anxiety, antidepressant and antipsychotic medications. The response is monitored and documented. Family members can provide important feedback in this type of situation. 

The journey continues. I'm hoping my blog can in some small way make a difference and help others who are traveling down this road. 

Thanks for stopping by.