The Difference a Year Makes

I was looking through photos and noticed that I have a photo of Mom from almost exactly one year ago today. This photo of Mom and Jeff is from June 19, 2011.

Mom and Jeff June 2011

Sometimes I forget how much has changed in the last year. Mom was walking, able to talk with us, go out, and feed herself.

Today she is on hospice, barely talks, needs to be fed, stays in bed or a Broda chair, and has to be moved with a Hoyer lift because she can't walk or move on her own. You can tell from this photo that so much has changed in the last year.

Mom and Dad, July 2012

Photos like this remind me to not get too caught up in just what is happening right now but to remember that our lives are made up of all the years we have been here.  It can be easy to get bogged down in just how hard things are right now and forget all of the other great years you have had together.

Blessings,

Rev. Katie

Hospice: What's In A Name?

Last week Mom qualified for hospice. When most people think of hospice, they immediately assume that the person will be dying within the next few weeks and hospice is an emergency situation. But really hospice is a concept of care for terminally ill people in which care will be provided that will neither prolong life or hasten death. Hospice focuses on comfort care, maintaining dignity, and addresses the emotional, social, and spiritual aspects of dying. To qualify for hospice, a doctor must assess the patient and determine that they believe the person has no more than six months to live but really people can be on hospice for days or years so time frame is really not a given once someone is put on hospice. So, that is what the name hospice technically means, but we have found the name has meant so much more in how people have started treating Mom.

Mom in her new Broda chair with Morrie and Dad

It has been surprising to me and Dad that as soon as people heard the word "hospice," they have been calling and asking how they can help. Do we need food? Would Mom like visits from people?

The thing is that for at least two years we have been telling people directly: "Carol would really like you to visit with her." Yet just a handful of family and friends have visited her and in fact more people have withdrawn from her than visited her since she was diagnosed with dementia seven years ago.

There are a few things going on here that I can tell. One is, like with most diseases of the brain, people are scared of dementia. Dementia has a lot of stigma attached to it and people don't know how to communicate with their loved ones with memory loss. Due to fear and being uncomfortable, people often abandon those with dementia.

However, as soon as someone goes on hospice, things become more understandable to people. First they assume there will always be a medical professional around, so they wont be left alone with their loved one and they feel more safe. Just because someone is in hospice does not mean they have caregivers with them at all times though. Second is that people know hospice means someone is dying which interestingly makes people more comfortable than trying to deal with a chronic illness that they can't fix and seems to have no end in sight. The word "hospice" means "end" to many people. People think there are things you can do in the end, and everyone wants to be of use. They want to cook food, clean linens, do dishes, get groceries, etc...

What people don't know is that you can often help people most just by your presence, by spending time with them. In any illness, no amount of food made, sheets changed, or dishes cleaned matter in the end. The deep feeling of abandonment when people pull away and don't visit breaks someone's spirit in a way that is indescribable and at the end of their days, that feeling of long-term abandonment is what they will remember, even people with dementia.

In my experience with Mom and in my work ministering to many people at the end of their life, I have seen the most pain happen not because of illness or the question of "Why is this happening to me?" but rather the question "Why did everyone leave me?" This is the spiritual question at the center of their suffering.

I try to explain that people don't pull away because they don't care. Rather our American culture has taught us to be afraid of anyone who acts "different." We also hide the sick and dying and we think we can fix everything. We teach that the only way we are of use is to solve problems but not deal with emotions. So most people pull away because they just don't know how to be present with us in our hardest times.

Along the same lines, this abandonment happens not only to the person with dementia but to their caregivers as well. Bob DeMarco has written a wonderful piece about this in the Alzheimer's Reading Room called Are Alzheimer's Caregivers The Forgotten? He is much more blunt than I am and I would just like to quote one part of his post: "Like it or not, if you are a family member or friend of an Alzheimer's caregiver and you are not helping them -- you have abandoned them. I am sure this sounds harsh. But, it's not even close to the harshness of your own behavior."

I do hope that this blog post helps you if you have a loved on who is sick to know that your presence is needed before they end up in hospice. I know it's scary and uncomfortable, but if you can visit for a bit you will bring more help to your loved one than any medication, cleaning, or doctor can. You are walking with them through the hardest and loneliest time of their life. You are the footprints of God which will accompany your loved one on their journey.

Blessings,

Rev. Katie

Difficulties of Home Care

We now have hired caregivers in the house 24 hours a day, plus Mom is in hospice so we have nurses aids coming twice a week and a nurse once a week. They are all fantastic people and Kendal at Home is working hard to coordinate our caregivers from Caringtree and the aids and nurses from Hospice of the Western Reserve. The problem is that providing care in the home is difficult. Actually, providing good care at home or in an institution is difficult too, but for different reasons. So, let's talk about some of the issues in home health care and how to manage them.

The first thing is that hiring a caregiver from any of the home health agencies does not mean you are getting a medical professional. These caregivers are great but some may only know how to do tasks like grocery shop, cook, and clean. Others may only be companions. When your loved one gets sicker, like Mom, you really need to explain exactly what you need in order to get the right person. The problem is, most of us do not know what we need as we are not doctors or nurses ourselves. Fortunately my Dad is a doctor and so he notices when someone is feeding Mom too fast and she could aspirate or choke. Dad and I have both been in hospitals enough to know Mom needs to be turned every two hours to prevent breakdown of her skin (bed sores). She also needs fluids every few hours and must have her incontinence briefs changed. She has to be lifted out of the bed with people trained on how to use a Hoyer lift. She really needs constant supervision and medical aid for her tasks of daily living (toileting, cleaning, and eating) and these need to be done in a way that are safe for her which means you need medical training.

When a family calls a home health agency for help, we assume since this is their profession they can assess the situation and know exactly what needs to be done and the skill level needed for the caregivers. This is not true. And, that is not saying anything against the agency. I think what is happening is that home health care is new, there are few regulations, and they are figuring out how to get everyone trained for every possible situation within the federal regulations of what kind of care non-medical professionals can provide.

Hoyer lift in Mom's room. We now have a hospital bed for her.

So, here are some of the things I suggest you ask in order to get the right caregivers in your home. Help the home health agency figure out if you need a caregiver, nurses aid, or nurse because they are all different. A caregiver can feed someone who can not feed themselves, but they may not be trained to feed people who have difficulty swallowing and could aspirate like a nurse would be trained to do.

1. If your loved one can't feed or drink for themselves ask if the caregiver has been trained for proper feeding of people with swallowing difficulties. Does the caregiver know how to avoid aspiration of foods and liquids and what do they do if it happens or the person chokes?
2. If you have equipment in the home, will there be at least one caregiver on duty who knows how to use the equipment at all times. Have them show you how they use it, and practice on you, not your loved one. Mom got dropped out of the Hoyer a few times. 
3. Ask questions like: How often will you be changing her briefs? (should be every two hours or when soiled) How often will you turn and reposition him? (should be every two hours) How will you engage with her when she is non-responsive yet awake? (They should read to them, talk with them, play music for them, engage with them, not just let them sit in a chair or bed.)
4. Always watch all new caregivers perform all tasks before you leave them alone with your loved one. Each situation is different and your parent, friend, or child deserves personal care so make sure the care is tailored to their needs.
5. Always kindly ask for what you need and never feel like you ask too many questions. These agencies really want to care for your loved one well and with dignity but this really is a new area for all of us so they are open to feedback and working together with you.
6. Thank your caregivers when they do something well. Let the coordinator of the home health care agency know when the caregivers have gone above and beyond.
7. Don't panic! One or even a few mismatched caregivers does not mean you will never find the right ones. It takes an adjustment period but it will work out. 

Our experience has shown me that communication is key. We trust that the organizations we are working with are good people who really care about Mom, and that is important. If you feel they don't, then find a different group.  Fortunately for us, the people we are working with are great and trying to get Mom the best care possible. As we have found good matches for caregivers, some of them have brought music for Mom to listen to, talk with her, Mom has NO bed sores (this is amazing), they advocate on her behalf if they think a new caregiver might not be a good fit or if we all need more training on some new medical equipment.

While it may be stressful at times, our little army of people keeps talking in order to find out what is best. And every time families and home health agencies work together, the more we learn and can create a better system for everyone going forward.

Blessings,

Rev. Katie