Lessons I Have Learned From My Mother's Journey
Posted Feb 14, 2018 by Joan Keston
From being a totally independent person to living in a Skilled Nursing Home
By: Sissy Weisbrook
We are a middle class family and my Mom had some money, so we had no idea that government benefits might be available to folks in our situation. We now live in fear of running out of money. I started working for Keston Law and only then learned about benefits. I decided to write this article because I have learned so much about what many of us will face or do face with aging parents or other loved ones and how daunting the task can be. If you have never been in the world of nursing facilities it can be an overwhelming maze unless you have some prior knowledge or even know what to look for. The most important thing you can do is to be prepared, ask questions, and keep asking questions. That way you will make better, well informed decisions.
Go see an Elder Law Attorney and get your affairs in order.
We go to experts for all sorts of things but for some reason we are hesitant to go see an attorney. It will be worth the time and money to have a professional help you prepare for your loved one’s later years. They can advise you and work to protect your money and assets. In addition, they may know of benefits you might qualify for and help you with that. Today’s medical environment is confusing and many people think that Medicare pays for nursing home stays. It does not. It will pay for some things that might take place in a nursing home and for a rehab stay, but not for a permanent living arrangement. Most people in nursing homes are self-pay and that is so expensive that you can run out of money very quickly. By working with an Elder Law Attorney, you can save yourself a lot of heartache and regrets, and make a stressful situation more manageable.
Learn about the types of nursing homes in your area.
There are all types of adult care homes and the level of care needed usually determines where your loved one needs to be living. Independent Living, Assisted Living, Nursing Home, Memory Unit…understand what each facility has to offer in their organization. If you start out in Independent Living or Assisted Living, can you move up within the facility to a higher level of care? What is the cost differential? What is the financial arrangement?
You will hear the term Activities of Daily Living or ADLs. These are physical conditions upon which a person is evaluated…eating, toileting, bathing, dressing, walking, transferring. There may also be cognitive issues involved. But just because someone has dementia doesn’t necessarily mean they need to be in a memory care facility. Most clients in Skilled Nursing Facilities have some type of cognitive impairment, but can get along fine in a Skilled Nursing Facility or even an Assisted Living Facility. This is a discussion for you and your loved one’s doctor or physical therapy team.
You need to understand the costs, what is included in the facility structure and the physical or cognitive conditions cared for at each level. Remember moving as few times as possible is critical, especially for people with cognitive issues.
Shop around and look at all the places that are available in your area. You might want to take your loved one with you so they can see what goes on in a facility. Visit during lunch or dinner hour so that you can see the staff in action. If you go at 3 o’clock in the afternoon, you will likely not see much going on since many residents are in their rooms napping, and the staff is doing paperwork and telling the next shift about what happened during the day. Visit a couple times and set up an appointment to talk to the administrator. Understand their philosophy concerning the elderly. I used the “Nursing Home Checklist” available on the Keston Law website when I visited nursing homes. Take notes. The administrator should be happy to answer all your questions and if they are not, keep looking.
Get to know the people who will be taking care of your loved one.
Get to know the names of the people who will be caring for your loved one. Visit the facility during the different shifts so that you can meet them all and introduce yourself to them. Personally, I have found most of my Mom’s caregivers to be “angels on earth.” They do a job that I could never do, and they do it for people who are virtual strangers. Thank God for people who go into this field.
Spend time with the caregivers. They do most of the day-to-day caring for your loved one, so get to know them and let them get to know you. Usually they can tell you how your loved one is doing better than anyone else. Also, tell them about your loved one, the names of their children or spouse or any pet they may have loved etc. These details help them to relate more quickly to and have conversations with your loved ones.
Tell the caregivers how much you appreciate what they do for you. Not only are they caring for your loved one, they are doing it because you are unable to do it. Thank them every day for being there for your loved one. I write them notes telling them how much they have done for my Mom and family. At Christmas time, my family gave them a gift to show our appreciation for what they do. (Find out the facility’s policy in this regard so that you can avoid uncomfortable issues.) I have found that these small acts of kindness go a long way. Like most of us, we want to be appreciated and noticed for what we do, so consistently thank the people who are doing the heavy lifting…My Mom’s Angels on Earth.
Introduce yourself to the nursing home doctor who is taking care of your loved one. You might have to camp out early in the morning to catch them doing rounds. Ask the staff when the doctor comes in and then plan on spending some time waiting for him/her. Once you meet them, let them know as much medical history about your loved one as you know. Also, this is the time to talk to them about their medicines and what other health issues they may have. I keep a list of the medications my Mom is on so that I can keep track in case of billing questions or adverse side effects. The nurse on staff usually can get to the doctor quicker than you can, so that is another great resource to use. I go to the nurse with any issue I have with my Mom and she relays it to the doctor. Fortunately, our doctor has responded quickly and I can call her directly if I need to talk to her.
Make the room feel like home.
When setting up your loved one’s new place, fill it with familiar things. This is not the time to redecorate or buy new things. Try and keep things as similar to home as possible. I know the places are small, so do the best you can and make it feel like home for them.
I have placed family photographs and posters of locations my Mom enjoyed in her room. I put a white board on the wall so I could exchange notes with the staff. I keep a candy jar filled for my Mom and staff to enjoy. I also put an atomizer with essential oils in the room. It not only makes the room smell nice but has medicinal benefits as well.
Put nametags in all their clothing if the facility does not already do that. This helps to keep things from getting lost or misplaced.
Support the family caregiver.
This was one of the most important lessons for me. If you are not the family member living near the facility and doing the day-to-day stuff for your loved one, DO NOT GIVE ADVICE UNLESS ASKED. Initially my Mom lived in Pennsylvania and my sister took care of the daily issues and care. My Mom now lives in Wilmington, so I am the family member overseeing my Mom’s daily care. I now have seen both sides.
At first I thought that there wasn’t much to do other than visiting my Mom. BOY WAS I WRONG. The main family caregiver is the point person for the nursing home. If anything goes wrong you are the one called and you have to deal with whatever issue is going on at that time. If your loved one is in an Assisted Living Facility, you are the one taking your loved one to the doctor or dentist, and providing transportation for wherever and whomever they need to see. Don’t forget that the family caregiver usually has a family and career too, and is now living two lives, your life and the life of your loved one.
Juggling many balls at the same time and worrying about your loved one can become overwhelming and exhausting. Take care of yourself. If you go daily, take a day off a week and stay home. Once the care team at the nursing home knows you and your loved one, you can feel comfortable that they are getting the care they need. Don’t feel guilty. I have learned that when I am not there, my Mother usually does more than I think and is very involved with the people at the nursing home. I usually go on the weekends when there is a reduced staff, so that I can help out a little and give my Mom some added attention.
If you are a family member or close friend of the loved one who lives at a distance, go visit your loved one in the nursing home as often as you can. When you visit, take over for the primary/main caregiver so they get a break. Your visit also allows you to get to know the staff and for the staff to put a face to a name they heard. This will be very much appreciated by your loved one and the primary caregiver.
Know your facility’s costs.
When you are looking for nursing homes, be prepared for sticker shock. They are expensive…..and more expensive doesn’t necessarily mean better care. Most nursing homes are private pay. That means you or your loved one is paying the bill. If your loved one has long term care insurance this will help offset the cost. However, chances are the policy does not cover the entire cost. My Mother’s skilled nursing facility costs $270/day, about $8000.00 a month. I made sure to know what that covered and asked to see an itemized list of all additional costs, so that there was no misunderstanding on my part. You don’t want any surprises.
Touch your loved one.
Touch your loved one. Hug them, hold their hands when you talk to them. Put cream on their hands and feet. If it is your Mother you are taking care of, give her a facial, put make-up on her, make her feel pretty. Many older people miss being touched or hugged….this is very important for their well-being.
Get informed and get support.
If your loved ones have dementia or any cognitive impairment, it is very beneficial to go to a lecture on dementia or Alzheimer’s. Senior Centers often have lectures about dementia/Alzheimer’s and other topics that you might find helpful. Research local organizations that might be helpful in providing information or support. Try to find a support group for family caregivers…it is a great way to keep from getting burnt out.
PS: This article is my opinion and experience only. I hope it might help you, and I certainly hope it can help my daughter to know what to do when I can no longer take care of myself.