PODCAST 5 – Making the Caregiver Decision Part 1
This Podcast is available for listening at Ancient Faith Radio
Glory to Jesus Christ, Glory forever.
This is Deacon Mark for A Christian Ending.
In earlier podcasts we’ve tried to gain a more patristic understanding of death and the problem of suffering. In our last podcast we talked about the fact that, just as death is not part of God’s plan for mankind, neither are sickness and suffering. And as neither death nor suffering was created by God then neither of them can be considered Natural.
So I asked the question last time….what do we do with this information.
What do we expect the church to do?
What do we expect the priest to do?
What can I do?
Through our years of caring for sick and dying parents, we have come to a very strong conclusion that perhaps the most important first step we can take as a community is to create a visitation ministry.
In our parish we have some people who just do this naturally. If someone is in the hospital, they will be there. If someone is shut –in they’ll just be there. If someone is in a nursing home they’ll go for a visit. This is a wonderful talent to have and a real blessing to the people they visit.
I hope your community has some of these people too; even so, we need to try to establish some type of visitation ministry; not just for the shut-ins but for the care givers as well. There are a lot of people out there who are taking care of their aging or sick parents. Some are taking care of parents and kids. Many other people are taking care of chronically ill or dying loved ones other than the elderly.
These people need help.
We can’t expect the priest to be all things to all people. In reality, we often do expect that, but it is totally unreasonable to do so. Of course the priest is going to try to visit as many people as he can, as often as he can. This may be the most enjoyable part of his job for him. But he needs some help, especially if he has a large parish, or if he doesn’t, if we would like for him to grow our parish. He has a lot on his plate. A visitation ministry can really help him keep tabs on folks, how they’re doing and how they’re feeling, and it becomes really important particularly toward the end of their life.
A phone call or a visit can mean a lot. But, if you can build a relationship and get to the point where you can sit with the patient and give the caregiver time to get out of the house it’s even better. You’d be surprised how enjoyable even a trip grocery shopping can be when you haven’t been out of the house for a week and you don’t have to worry or hurry home. Even sitting long enough to allow the caregiver to take a shower could be a real blessing.
The main thing is to try to come at a good time and not a bad time. It’s usually not a good idea to just drop in on a caregiver. It can be embarrassing or even do more harm than good.
Also, make sure they know you are there to help. Be prepared to do whatever the moment demands, whether its help changing an adult diaper or brewing a cup of tea. As a ministry, we should be there to help and not to add to the burden.
Especially, if you are considering becoming a primary care-giver, I recommend this ministry if at all possible. It can really help you get an idea of what you are in for.
Our workshops and retreats are often dominated by questions about caring for loved ones with dementia. This is such an important topic these days that we have added a section to our presentation just about dealing with dementia. We thought we’d take some time to address this in our podcasts.
We’re not experts, and we don’t pretend to be. But we have learned a few things in our years of care giving. We hope that our experience may be of some assistance to you.
Sometimes there is nothing we can do for the physical recovery of a patient. Many chronic and fatal diseases leave us no medical recourse or hope. In these cases we place ALL our hope in God and serve the patient with all the love, care and stamina we can muster.
If a loved one has cancer, they may get a diagnosis of 4 months or 6 months to live. That’s pretty short period of time. You call hospice, make plans on whether to care for them at home or in a facility, and make the arrangements.
With dementia it is not that simple. Someone with dementia gets sicker by the inch, not by the day. It makes it very hard to decide when to call in home health, place them in a facility if needed, and especially when to call in hospice. We’ll talk more about hospice later.
Alzheimer’s disease and other types of dementia are epidemic in our society. Many of us are faced with the prospect of caring for parents or spouses with dementia.
We’re not health care professionals. We’re just two people who decided we would be the ones to take care of our parents. I’m not able to relate anything definitive or professional to you. All I can do is tell you about our experiences and hope it may help if you are in a similar situation. Every situation is different. Yours most certainly will be different from ours.
It is vital that, if you make the decision to become the primary care giver, you do so with your eyes wide open and have at least some idea of what you are getting into. Like having your first baby, no matter how prepared you are, you won’t really have the full picture until you are into it.
Before we get very far into the subject of caregiving there is something I really want to stress with you. I’ll probably come back to it more than once. You absolutely MUST grant yourself the mercy to say “I can’t do this.”
Caregiving is not for everyone. No matter what your circumstances or who you are caring for, it is hard.
If there are any experienced caregivers out there who have had an easy time of it, please contact us. We’d really like to know about your experience. Every caregiver we’ve ever met talks about how hard it is.
Please don’t get me wrong. I’m not here to talk you out of it; though perhaps I should try to. We’re going to talk about our experiences and we’re going to talk about some ways you can analyze your own motives and your abilities. After all that, if you feel called to care, then God bless you.
Elizabeth will tell you it is a very rewarding experience. She’ll tell you about finally getting close to her dad in ways she never thought possible.
But I’ll tell you, the entire experience is fraught with spiritual peril.
I just want you to be as prepared as possible. And I’ll say it again, after you have gained as much knowledge and information as you can, you absolutely MUST grant yourself the mercy to say, “I can’t do this.” And also, if you make the decision keep them at home, you absolutely must grant yourself the mercy to say “I can’t do it anymore.” There are many reasons that people become caregivers, many are good reasons, some of them are bad reasons.
We’ll talk about that more when as we ask questions to help you assess your own motivation in taking on this ministry.
Also please remember, if you choose to care for your loved one in a facility, it doesn’t mean you don’t care. You are still caring for them. You’ve simply chosen the caring option that works best for all concerned.
If you choose to keep them at home with you, you’ll need help. You’ll need someone to keep tabs on you, on your physical, psychological and spiritual health. And you’ll need someone to care for the care giver. We’ll talk more about this in a bit but just let me give you the magic word to hold onto until we get there. The magic word is Respite….Respite…..Respite. It can save your life.
We prepared ourselves for 25 years. That doesn’t mean you need that much time. Not at all. But even with all our advance planning we had to make it up as we went along.
We never dreamed we’d have three of our parents living with us for over 6 years; Two of them had Alzheimer’s disease, Elizabeth’s dad, Frank and my mother. May dad had Parkinson’s disease and dementia and also suffered from alcoholism.
I believe we can file that one under, “Be careful what you wish for.”
Our experience with care giving began with Elizabeth’s mother about 10 years before.
Ella, survived breast cancer until we discovered it had metastasized in her brain. There was nothing that doctors could do so she stayed home with Frank. We acquired a hospital bed and she moved into the living room where Frank did his best to care for her 24 -7. We had several midnight emergency calls from Frank when he was at his wits end. Since we were only 15 minutes away we responded rather than call 911 or a home health care service. We had two teenagers at the time so we were thankful that Frank was able to handle most of it.
Hospice was great. At that time they were still all non-profit in our area. Now all the hospices are For Profit and the change has been noticeable.
The day Ella died, Elizabeth called me at work and said the hospice nurse had just been to the house. She had told her “Today is the day.” Elizabeth said, “Come on over now.” So I left work and headed over to Frank and Ella’s house.
We prayed and sang some hymns and waited.
For some reason I can‘t recall, had to go to the church. While I was there I stopped and said a prayer for Ella. When I got back to the house, Elizabeth was sitting on Ella’s bedside holding her hand. She said tearfully, “She just left.”
Talking about it later we decided “That’s about as good as it gets short of dying in a monastery, with everyone praying us on our way.”
We’ve been through this four times now, up close and personal, and we have helped others deal with it as well. Our remaining three parents came to live with us in our home and they died there, one by one.
We saw this coming a long way off. One of our earliest conversations as a young married couple was the realization that, if anyone in our family would take care of our parents, we would be the ones. That was in 1979.
After Ella died in 1996, we got serious about finding a house where we could care for our parents. We had been looking for water front property but we abandoned that idea in the 1990’s land rush.
We found a huge mid-century ranch house, a money pit, and immediately started working on it.
After our kids moved out we were in the home-share program for about 4 years. We had three or four clients including Joey, the miracle kid that I told you about last time.
Through all of this Frank was deteriorating. When he couldn’t golf any longer, he used to drive downtown every day for lunch and a walk. Then he’d stop at his favorite clothing store to talk to the girls who would naturally sell him some expensive shirt or sweater.
He liked to turn the heat up and walk around in his underwear. That was ok. It really wasn’t a problem, but we could see what was coming.
When he started having trouble paying bills, we would stop by on Sunday to pay them for him and see the check book.
We moved Elizabeth’s brother Frank in to live with his Dad and sort of killed two birds with one stone.
We tried to delay moving Frank senior in with us as long as possible. We knew it would be hard on him and we knew it would be hard on us.
Two weeks after Frank moved in my parents came for Pascha and never left.
Yeah, it was pretty crazy. My mom had serious dementia and she was improperly medicated. My dad was suffering the beginning stages of Parkinson’s disease and the late stages of alcoholism.
We made a lot of mistakes.
We can’t go into a lot of detail in the podcast format so I’ll try to keep it as short as possible and still give you the flavor of what our experience was like.
After weeks of chasing my mom and Frank around the house and through the neighborhood (my dad would mischievously let them out, just for a laugh.) Elizabeth finally laid down the law and told Dad, if he didn’t stop terrorizing her she was going to put my mom in a nursing home.
That helped, and my mom’s three weeks in the Medical University Psychiatric Intensive Care Unit really helped. They got her meds straightened out and she quit climbing the fence to get out of the yard.
Right here I’d like to give you a tip, if you are considering becoming the primary caregiver for a geriatric patient. Make sure you get them a gerontologist; a geriatric physician. Mom’s family doctor had prescribed Benadryl to relax her. We found out that Benadryl has the opposite effect on many geriatric patients. Her physician didn’t know this. It wound her up to where she couldn’t sit still. If you’ve never seen an eighty year old woman jump a hedge or climb a fence………well trust me, you don’t want to.
That trip to the Psychiatric ICU is one of the best decisions we ever made. If we hadn’t done that mom would have continued to be manic and miserable and we might well have abandoned the whole idea of trying to take care of them ourselves.
We were able to set up our house as a nursing home. We gave the parents two bedrooms, the family room and two bathrooms. We occupied the master suite over the garage. This was our refuge.
We added a summer room for their enjoyment. I also took a small bathroom and closet near the laundry room and created a large shower room. We put a drain in the floor, and two shower heads. The entire room has a shower tray under the tile. This came in really handy since, with a special shower wheelchair, we could just wheel them in and give them a shower, then hose down the whole room.
Of course, we had to install handicapped rails in all the bathrooms as well as extended potty seats on the toilets. We were able to purchase a folding wheelchair ramp to get them in and out of the house to the patio so they could enjoy the weather.
I’m telling you all this to let you know what you May need to do in the future. Your mom may be ambulatory now, but one thing we learned, if you live long enough you Will break your hip.
When mom broke her hip she didn’t have the mental capacity to go through rehab. Because of that, she spent the rest of her life, the last 5 years in her bed or in a wheelchair. When Frank broke his hip he was able to rehab enough to at least help us transfer him from bed to wheel chair to recliner. My dad simply didn’t live long enough to break his hip. He died of cancer after about 3 years with us.
You may be getting the picture that care giving is not for everyone.
Finances are a very big factor in any decision you make.
We were very fortunate that the parents’ finances were in good shape. Frank and Dad both had good retirement and health insurance. This, plus Social Security and Medicare made all that we did possible. They had enough income and savings to afford care for about 16 hours a day. Elizabeth was able to quit her good paying but very stressful job to stay home with them. It became very clear that that would not be enough. We went through a number of part time caregivers of varying experience until we found two wonderful ladies who stayed with us for the duration…several years.
Good help is absolutely indispensable. If you have to go through an agency it will be very expensive. And they are very limited in what they will do. Some don’t cook. None of them clean. They charge high rates and usually will only, literally sit with the patient.
If you try to hire your own, you may find a lot of duds before you get a good one. We were fortunate to find two ladies who really cared, they had experience, and we became good friends. We’ve recommended them to others and they’ve stayed pretty busy just caring for folks in our parish. Thanks be to God, it worked out well for everyone.
We’re running a little long for this podcast so I think this is a pretty good place to stop. Next time I’d like to start by asking a few True or False questions to test your Dementia awareness quotient. Then we’ll talk more about caregiving and things to consider if you are faced with that decision.
Please remember to send your questions and comments to us at AChristianEnding.com
You’ll find the email link at the bottom of the home page.
Check out our blog while you are there and perhaps leave a comment. We’d love to hear from you.
Thank you for listening. This is Deacon Mark for A Christian Ending on Ancient Faith Radio,
May God grant you many, many years.