I grew up in Tecumseh, a small town in Michigan which wasn’t big enough to have a full-time professional Fire Department. At any time, day or night, the fire siren would go off and volunteer firefighters would jump in their cars and race off to the Department. They would throw their gear on, jump on the fire trucks and, with lights flashing and sirens blowing, drive off to whatever emergency needed their help. Every small town, in the Midwest, had volunteer Fire Departments made up of farmers, shop keepers, mechanics, teachers, merchants, and anyone else who wanted to help and could meet the standards.
We lived on the southern edge of Tecumseh and every house, in our neighborhood, had about an acre of land. You can imagine the fun we had with all this open space to play in. One bright summer day, my sister burst through the back door. She grabbed my hand and said, “Come quick David!! Our campfire is getting too big and I can’t put it out.” I went with her out the back door and saw that her campfire had spread and had become a line of fire about two acres long that was racing across the fields towards the houses. When I saw the fire, I knew that this was too big for a ten-year old boy to handle, I needed to get help right away. I was about to turn around and get our mom to call the fire department when I heard the fire siren go off and soon Fire trucks and fire fighters were in the field and the fire was out.
I love the old Beatles song, HELP!! It starts out, “Help, I need somebody, Help, not just anybody, Help, you know I need someone, HELP!!” Have you ever been in the place where you knew something was too hot to handle and you needed to get help? What did you do? Who did you call? Some of you are reading this blog because you know that is exactly where you are now. You know your in over your head and you need a break, some time off, a vacation. Yet, even that thought makes you feel guilty, sad, and filled with despair because you know there is no way for that to happen. In the scriptures we read, “You don’t have what you need because you didn’t ask.” (James 4:3) Sometimes we don’t ask because we don’t know where to start.
Some of you won’t ask for help because of a false pride that says, we don’t take charity! We take care of our own. The Beatles sang, “I never needed anybody’s help in any way but now these days are gone, I’m not so self-assured, Now I find I’ve changed my mind, I’ve opened up the doors.” Please, change your mind, let those ideas go, open the door to people who will help make your life bearable.
One very hot summer day we were visiting Harriet’s brother. The kids were swimming in the pool when one of them noticed smoke coming out of the top of the barn. “FIRE!! They burst through the door, “THE BARN IS ON FIRE!!!!” The adults sprang into action. Harriet got on the phone and called the Riga Volunteer Fire Department. Terry ran out to see if the tractors, trucks, and cars. in, or near the barn could be saved. Someone else grabbed a garden hose and started squirting the top of the barn. Vehicles were being moved to make way for the fire trucks. As fast as we moved not everything could be saved. That barn had stood there for over a hundred years and the wood was tinder dry. By the time the firefighters arrived it was too late to save any part of the barn. They were trying to get the fire out while keeping the other buildings from catching fire.
What a sad day, yet, how much worse would it have been if Terry had said, “Harriet, put that phone down!! We take care of our own problems, I’m not going to have a bunch of people running around feeling sorry for us. A bunch of do-gooder firefighters who expect me to take their charity.” If that had happened the barn, the house, the garage, and most of the other out buildings would have been lost. As it was, the fire was so hot that it melted the vinyl siding on the house that was at least fifty yards from the fire.
This dementia is like a fire consuming your loved one’s life and, if you don’t get help, this disease will kill you too. After the cars and trucks were moved, Terry ran into the barn and was bringing out antiques and other valuable things. He was in the burning building attempting to get an old antique truck out. Harriet ran in and said, “You need to get out of here now! It’s too dangerous, the roof is about to collapse! You’re more important than anything in here!” They ran out of the barn together and were just a few feet from the door when the roof collapsed and burning timbers fell right where they had been standing seconds before. Some of you are, like Terry, all alone in the fire, which is the worst place you can be. Studies continue to show a high percentage of caregivers who either get dementia, or die before their loved one, from some other cause.
One thing I love about farmers is the way they take care of each other. If the Fall Harvest was at hand and Harriet’s brother had suddenly died, the farmers in his area would come and harvest the crops and they wouldn’t charge the family a dime. Next spring, they would show up and freely plant the crops so that Terry’s family would be taken care of. They all know that if the tables were turned, Terry would be there for them. No one even needs to ask for the help, farmers just show up. When they came Cindy would go out and say, “Thank you so much.” She would never say, “You guys get off my land! I don’t accept charity from anybody!” It’s not charity, it’s people at their best helping other people. These farm families are following the teachings of Jesus, who said, “Give and it will be given to you; good measure, shaken down, pressed together, running over will be put into your lap.” (Luke 6:38) Don’t let false pride, keep you from asking for and accepting help.
Please listen to me. I was a pastor for over 30 years. I served on the Respite board, trained Steven Ministers, and worked with people receiving Hospice care. No one in those ministries look down on the people they are helping. No one thinks of this as charity, rather, they feel so blessed that God is using them to help people who are dying and their families.
If you’re like me, with the Beatles’ song playing in your head, “HELP, I need someone…” then let’s talk about what can be done.
First, you need to do a little investigation, which will involve phone calls, talking to people, and visiting places where help is available. No matter what stage your Loved One with Dementia is at, you should come up with a list of organizations that help, with phone numbers and e-mail addresses. As you are doing your investigation don’t just think of what kind of help you need right now, think long term. All types of dementia are progressive, which means you will need a different type of help next year, than you do today.
The Lenawee Department on aging, has a resource guide which has the type of services, agencies which provide those services, and contact numbers. On the list are: Adult Day Care, assisted living Facilities, Home Health Care, (medical and non-medical), Hospice, Nursing homes, Respite Care, Senior centers, and Support groups for Alzheimer’s, Parkinson’s, Eldercare, etc. Harriet’s Neurologist gave her this resource guide. If your doctor didn’t give you a sheet like this call the office and request one or call your county offices and see how you can get one.
Harriet has Frontotemporal Dementia, but in Lenawee County there is nothing available for this type of dementia. However, if I call the local office of the Alzheimer’s Association, I can get a list of dementia support groups and home care. I can go on line to the website for the Association of Frontotemporal Degeneration. From there I can get phone numbers and contact information.
Once I have an idea of what’s available, I need to go online, or make phone calls, to see what ministries are offered and if there is any cost to me. For example, the Respite board in Owosso, Michigan, provides free care to anyone who is homebound. The trained caregiver will come, usually once a week, for 2-3 hours. When they arrive, the caregiver can leave and do whatever they want, or need to do. If the idea of free makes you uncomfortable, Respite has several fundraisers every year and accepts donations. Many people, who have received the ministry, will ask those attending their LOWD’s funeral to donate in memory of the Loved One.
You do not have to make all these calls or gather all this information by yourself. Get family and friends to help. Plus, there may be an Alzheimer’s office or Senior Center, which has all this information available. Also, if you’re a member of a church, synagogue, mosque, or other place of worship, ask people there for information or help. Remember, a successful caregiver never does this alone, they are wise enough to reach out for help.
Once you have the information together, you’re ready to call a meeting of family and friends. At this meeting, you will discuss where you’re at and what kind of help you need. You will also develop a team of helpers who can come in and give you some time away. We developed a Care team which included, our Adult Children, grandchildren, son/daughter-in-law, sister-in-law, cousins, an aunt and uncle, and friends. At this time, we only need occasional help.
As you develop your care team, you need to use a lot of wisdom. Some family and friends should not be on your team. You would not believe all the stories I’ve heard of people who use this position of trust to steal, manipulate, and embezzle. Also, some people will cause all kinds of trouble with relationships. These people seem to delight in stirring up trouble, division, and heartache, wherever they go. Pray, keep your eyes open, and be cautious. You have enough trouble and heartache without allowing self-centered people to bring more into your life.
As Harriet’s FTD progresses, our tentative plan is:
Currently – Stage One
- Occasional days away with a care team member helping.
Stage Two-Beginning
- Mandatory
once or twice a week away
- Care team member
- Respite minister
- Adult Day Care
Stage Two – Advanced
- In home care
- Non-medical care
- Medical as needed
- Time away
- Care team
- Respite
- Paid in home care
Stage Three
- In
home hospice care
- Time
away
- Care team
- Respite
- Time
away
If in home care becomes impossible
- Nursing home
- Memory homes
- Hospice house
Do not wait until you’ve gained 40 pounds, have high blood pressure, developed type two diabetes, and need medication for depression, to put these things in place. Self-care is not selfish. Who will take care of your LOWD after you’ve gone in the hospital or died? Taking care of your self is a part of being a good caregiver. Start the process TODAY.
Last week, Cindy and Harriet spent the day shopping, I visited some dear friends in Owosso. Next week, Cindy and Harriet are going shopping again. What am I going to do? Anything I want to. It’s not necessary to get time away right now, but it is important to get good habits in place, so that when it is necessary it will seem normal.
The Fire is burning, the Alarms are going off, will you perish in the fire or call for help? Sing with the Beatles, “Help me if you can, I’m feeling down, And I do appreciate you being ’round, help me get my feet back on the ground, Won’t you please, please help me?”
A Caregiver's Journal 