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

Crossing Into a New Phase: End of Life Issues

I am not really sure how we got to where we are today. Mom started to get worse over the last two weeks. Less able to walk, less able to talk, and having a harder time eating. She went to the doctor last Monday and her mini mental-state test score went down from a 10 to a 3. On Wednesday she was in a wheel chair most of the time but could still walk a bit to get to the bathroom when we lifted her out of her chair. Over the weekend though she has gotten even worse.

With those of us who see her on a daily basis, she barely talks, maybe saying yes or no and two or three word sentences. She rarely opens her eyes and sometimes smiles. Fortunately when other people visit her or talk to her on the phone she speaks more so that is good. She can't feed herself at all and we feed her. She can't walk or support her own weight so we lift her to get her in and out of bed. She can't use the bathroom anymore. She now clenches her hands, which is very common in late stage dementia. It can be bad because the skin on her hands can breakdown. She knows who we are but usually doesn't say our names, except for when she asks for my Dad.

Today when I was there she never opened her eyes or talked to me. Yesterday she talked to me a little but only opened her eyes when my husband Jeff or my son Jeffrey talked to her. She especially liked when my son did some karate style moves for her.

While I take care of people in the end stages of life for my job, it is different when it is your own parent. I am still in a bit of shock as I did not think we would get here this quickly. It was hard for me to walk into her room the other day and see her looking like the clients I work with who are dying.
We are getting orders for hospice and for probably a Hoyer lift to transfer her in and out of bed. Starting tomorrow we will have two people in the house with Mom at all times, so we have hired caregivers 24/7. We have been unable to wash, turn, lift, and do basic care for Mom all on our own now that she has gotten so bad so quickly.

Fortunately Kendal at Home, a senior continuing care community that allows members to age well in their own homes, coordinated all of these things for us. In one day they found all the caregivers and will be getting in touch with the doctors for the hospice and all the orders we need for medical equipment. They coordinate all the equipment rental, all the care supplies, everything that we will need to make sure we can care for Mom safely and comfortably in her home. I am so glad my Dad joined the Kendal program because I don't know how we would have coordinated all this so quickly and also made sure we got people who were responsible and trustworthy. And, if there are any problems with any one system, we just call Kendal and they take care of it.

As we go forward I will keep you posted on what works for us in caring for her so that if you are in the same situation in the future you might get some help and support from what we do.

For right now, in terms of activities for Mom, she is not longer able to do activities. But, we can read to her the types of novels she has always liked. Since she does not open her eyes much reading and music would be a good option at this point. We can still try looking at photos when she is opening her eyes. We can talk about old fun family stories and just be there with her as best we can. And, since she is more alert when visitors come over, we will invite people over more so that she has some fun each day.

Blessings,

Rev. Katie