PODCAST 7 – CAREGIVING FOR SICK AND SUFFERING
Glory to Jesus Christ, Glory forever.
This is Deacon Mark for A Christian Ending.
Today we’re going to continue talking about what is involved in becoming a primary care giver. Much of the information we have is applicable to anyone in a long-term care situation, but we’ll continue to focus primarily on the elderly and the terminally ill patient since that is our experience and ultimately what we’re talking about
Do you awaken at night to help your husband to the bathroom?
Do you arrange your schedule to fit your mother’s doctors’ appointments?
You’re not alone. According to the National Alliance for Caregiving, at least 44.4 million adults provide the care that is so critical in helping friends and loved ones with debilitating illnesses remain in their homes and other community settings. It is estimated that 80 percent of all care received by older Americans is provided by family members – spouses, children, grandchildren and other relatives – people just like you.
If you are considering becoming the primary care giver for a suffering patient, understanding what to expect will help you plan for their care and the coming transitions. Your knowledge will help you both honor a loved one’s strengths and capabilities throughout each stage, and make sure you have the strength and resources to carry on.
Whatever you do, don’t take on the caregiving journey alone. No matter how dedicated you are, at some point you will need some help in caregiving. No one can be awake and alert 24 hours a day. You have your own health and other obligations to consider. Having support in caregiving is key, whether it’s from other family, in-home help, respite care, or making the decision to move your loved one to an assisted living or nursing home
We were very fortunate. We planned well ahead so we weren’t blindsided. We also had plenty of people keeping an eye on us to make sure we were taking care of ourselves. Even with all our planning, we never expected to have three parents in our home at one time. That’s a pretty extraordinary thing. Even so, just taking care of one parent will change your life in ways you never anticipated. It’s kind of like having a baby. You think you’re ready, but when it happens you realize just how unprepared you really are.
In our last podcast we gave you some questions to think about before beginning a caregiver journey. It is a journey. Particularly in elder care, which has been our focus, it can seem like an endless journey.
This time I’d like to give you a taste of the things we need to be aware of as care givers. These questions come from a Care Giver Self-Assessment created by the American Medical Association. You can find it all over the internet.
During the past week or so, I have …
1. Had trouble keeping my mind on what I was doing
2. Felt that I couldn’t leave my relative alone
3. Had difficulty making decisions
4. Felt completely overwhelmed
5. Felt useful and needed
6. Felt lonely
7. Been upset that my relative has changed so much from his/her former self
8. Felt a loss of privacy and/or personal time
9. Been edgy or irritable
10. Had sleep disturbed because of caring for my relative
11. Had a crying spell(s
12. Felt strained between work and family responsibilities
13. Had back pain
14. Felt ill (headaches, stomach problems or common cold
15. Been satisfied with the support my family has given me
16. Found my relative’s living situation to be inconvenient or a barrier to care
17. On a scale of 1 to 10, with 1 being “not stressful” to 10 being “extremely stressful,” please rate your current level of stress.
18. On a scale of 1 to 10, with 1 being “very healthy” to 10 being “very ill,” please rate your current health compared to what it was this time last year. _______
These questions were designed to search out some of the telltale signs of stress and fatigue that caregivers need to watch out for. The problem is that often we can’t see the forest for the trees. The caregiver is often so close and so involved with the day to day stress of care that they don’t stop to assess their own condition. We really rely on friends and family to look out for us. This again is why Elizabeth and I think the first, most important thing that churches can do to prepare a burial ministry is to establish a visitation ministry.
There is loads of information available on the internet now and, if you have pencil handy, you might want to take some notes. Here are a few places where you can find lots of good information about caregiving.
National Hospice Foundation – www.hospicefoundation.org
National Alliance for Caregiving – www.caregiving.org
National Family Caregivers Association – www.nfcacares.org
National Information Center for Children and
Youth with Disabilities – www.nichcy.org
If you choose to care for your loved one in a health care facility, then that’s just fine. Remember, it’s not that you don’t care, you’re just choosing to care for them in the way that works best for you and all concerned.
All hospitals, assisted living facilities, nursing homes and hospice are not created equal. You must do your homework! Family members often times end up in a home or hospice that is recommended by a social worker. That doesn’t mean it’s the one with the best care or the best fit for your loved one.
You are their primary advocate. You must take charge and insist on getting what is best for your loved one. Regretfully, facilities of all types do what is best for them. You may have to fight to get them to do what is right and best for you.
Do your homework. Here are some things to think about when you begin looking at Assisted Living and Nursing Homes.
Get referrals: When you are going through something like this, others in your life tend to know what is going on. You probably have friends or church members who have gone through or are going through the same thing.
Check the Medicare Nursing Home Finder for reviews on the facility. You can’t expect everything to be perfect, but you want to know that the facility is in the upper tier of nursing homes in the area.
Take the tour. Make arrangements to meet with the nursing home administrator to take the tour of this facility. Ask questions, observe the staff, the residents and the activities that are going on.
Conduct the parking lot test. Wait for visitors to show up to visit their loved ones. Asked them how they like the facility. Speak to several different people.
Thousands of America’s elderly mothers, fathers and grandparents are being killed each year in the nation’s nursing homes – frail victims of premature and preventable deaths.
This is a quiet pandemic that is rarely detected by government inspectors, investigated by law enforcement, appraised by medical examiners or prosecuted by anyone.
These deaths are not at the hands of crazed “angels of death.”
Researchers in elder care say that most are caused by fatal neglect traced to caregivers upon whom residents depend for food and liquid and for turning them in their beds to prevent the formation of life-threatening sores.
Marie-Therese Connolly, who heads the U.S. Department of Justice, Nursing Home Initiative made a startling statement. She said, “Unlawful abuse and neglect is widespread, underreported, infrequently prosecuted and the cause of untold suffering, injury, illness and death,” in a study published in the Journal of Health Care Law and Policy.
It was really an eye-opener for us. We hadn’t been involved in the healthcare industry for years. When our parents were admitted to the hospital we learned that, if they needed, or we wanted them to have 24 hour care in the hospital, we would either have to be there with them or pay someone to stay with them. So, when my dad was admitted, I spent my nights after work in the hospital with him. I was there to make sure he was fed and hydrated and could get to the bathroom when he needed to.
Hospitals these days are primarily surgery and treatment centers. For recovery or nursing care you are expected to go to a nursing home or rehab center. What you have to understand about nursing homes is that they are for-profit businesses that are primarily focused on the bottom line. In most any nursing home there is no way that the staff can feed, hydrate and care for every patient. Each aid on each floor has numerous patients assigned to them. At meal time, it is simply impossible for a single aid to feed 6 or 8 patients in the time allotted for dinner and take care of their other duties. It’s physically impossible. The nursing homes that our parents went to for recovery or for respite care told us that if they couldn’t feed themselves we would have to make sure someone was there at feeding times to make sure they ate.
We made sure that we were there to feed them when they were in the nursing home. One of us would have to be at the nursing home while the other one took care of the other parents at home. When we went away for respite we had to pay our own caregivers to go to the nursing home to make sure they were well cared for. As time went on and the parents deteriorated, taking them to the nursing home for respite was just too much stress for them. We paid our caregivers to stay at the house with them 24 hours a day. By this time our aids had been with us so long that we trusted them completely. They set their schedules between themselves and took great care of our parents. Without this arrangement, and this trust, we would not have been able to take a break at all.
After they are admitted to your choice of facilities you must stay vigilant.
Make sure to visit at different times and on different days. Especially at meal times to make sure they are eating or being fed if need be.
Get to know the nursing home staff members on a first-name basis and become comfortable interacting with them.
Work with the staff through care plan meetings and other visits so that they realize you’re active in your loved ones care.
Even with all our care, planning and working with the nursing home staff. Frank came home once, after an extended stay, with a bedsore on his heel that went all the way to the bone. The doctors were afraid he might lose his foot. Elizabeth said “no way” I can’t lift him from the bed to his chair.” She and the nurses worked on that bedsore for about 16 months and finally healed it. He was able to help us transfer him after that.
By contrast, my mother was in bed for five years. She had very fragile skin that would tear very easily if you weren’t careful. Yet, she never got a bed sore, simply because of the level of care she got.
We were able to find fairly inexpensive air beds with the oscillating function for them. These beds are made for people who are bed ridden. They keep changing the pressure on the body so that bed sores don’t develop. These mattresses were about $150 ea, built to fit a hospital bed and they worked great. We got one for mom and one for Frank. They were very cheap but really good. The air pump was only good for about a year or two, but at that price we were able to replace them when we needed to.
In addition to the beds, we and the nurses were very diligent in making sure that neither of them spent too much time in one position. We generally checked their diapers and rolled them about every hour except during the night.
They were never allowed to have a dirty diaper either. Diaper rash and infections from diapers can be very serious in the elderly. If you don’t think you can change an adult diaper then elder care is not for you. When you figure we changed diapers for two adults 4, 5 or 6 times a day for 5 years, then you know we changed thousands of diapers.
Another thing you don’t think about, or at least we didn’t think about, was feeding time. To start with we all sat around the kitchen table and had a more or less normal family dinner. As time went on though this changed quite a bit. Mom broke her hip and declined rapidly. For some time we could keep her at the table and feed her there. After a while her food had to be puréed. Then we had to thicken her liquids. Of course all their medications had to be crushed and taken with pudding or apple sauce.
Frank followed suit about a year behind her. Finally mom couldn’t sit at the table anymore and we had to feed her in bed. It routinely took 2 hours to feed mom dinner. We’d take turns feeding her and reading, listening to the radio or just talking to her, but it took most of the evening to just feed her.
I guess another question you need to ask yourself is “do I have patience for this?” As I think I’ve said before, caregiving will try your patience, it will try your every nerve. It is fraught with spiritual peril. That’s something we weren’t prepared for. Somehow we managed it. Thank God we had the church. It was my primary refuge. I would routinely open the church at 7am on Sunday for a 9:30 liturgy. I’d prepare everything and then sit quietly waiting for Fr. John to arrive. Between work and the parents, it was the only peace I got.
We got very adept at using a Hoyer lift to move mom and Frank to and from their beds. It’s a handy hydraulic device that can save your back. Without it we couldn’t have kept them in the house for a last few years.
Here again, we were very fortunate and blessed. The parents had the resources, and with the Alzheimers Association respite grant we were able to take periodic weekends away from the parents. We would look for a special deal on a hotel room in historic Charleston, or even a couple of times we found a beach house in the off-season that we could afford.
We made big plans about all that we would do on our Stay-cation. Believe me when I tell you..all we did was sleep. We would get up to eat and then go right back to the room. We were simply exhausted. Remember…Respite, respite, respite….it will be your best friend and can save your life, your marriage or your family.
The Veterans Administration also provides benefits for Aid and Attendance, not only to veterans but for their spouses as well.
Check all your local sources too. Some local organizations offer respite grants.
Honestly, finance is probably the single biggest issue in eldercare. Routine care is not that complicated in most cases. If you have the finances covered, it is a major strain off of your mind. If finances are going to be an issue, no matter how much you care, or love, or how hard you work, the financial strain can kill you. You can end up with the care giver in worse shape than the patient.
We were truly blessed that our parents pooled resources made what we did possible. We were able to give them the care they needed because they could afford to pay for help for us. Without that we would never have been able to care for them as long as we did.
In the beginning the parents didn’t require 24 hour care. Elizabeth took care of them during the day and I had the night shift. Fortunately, the night shift mostly just consisted of settling Frank down and getting him back to bed at 2 or 3 AM. He’d get his days and nights mixed up sometimes. He’d wake up in the middle of the night thinking it was time to get up. He’d do his morning routine and I’d have to get up and tell him to go back to sleep.
As they progressed in their dementia things would get a little more complicated. My mother would wander sometimes at night until she broke her hip. We’d find her asleep on the living room floor from time to time. Her wandering stopped when she broke her hip. She didn’t have the mental capacity to go through rehab and walk again, so she spent the rest of her life in bed.
Frank, on the other hand was just able to rehab enough to help us transfer him from the bed to his wheel chair and back again after he broke his hip. That’s another thing we learned. If you live long enough you will break your hip. At least that’s our experience. My dad’s Parkinson’s had him losing his balance and he was well on his way to a broken hip. Cancer and pneumonia took him before that could happen.
An Eldercare Attorney can be a great asset. They can help you arrange financial matters to allow you maximum government benefits. You must plan years ahead for this. Start talking to your parents early and get a Power of Attorney before things go too far.
There are mechanisms for parents to divest themselves of most of their resources to qualify for more benefits. Often these things need to be done five or more years ahead of time.
The Alzheimer’s Association offers respite grants (depending on funding they offer $500 for respite care) They’ll help you pay someone up to $500 to watch your loved one while you take a much needed break.
Remember a Durable Power of Attorney is a time bomb. It gives the designated person complete power over another person’s finances and life decisions regardless of the primary persons health or mental state.
It is absolutely essential for elder care. But the person granted this power must be completely trustworthy. Also, we have heard from other folks that it really doesn’t work for one sibling to be the primary care giver and another sibling to have power of attorney. All families are different but I figure if my child is trustworthy enough to take care of my health and my life, they can probably be trusted with my finances as well. Power of attorney and care giving can be just another opportunity for sibling friction if you are not careful.
Just because one sibling may be better at finance than the care-giver, it doesn’t necessarily make them the best choice for Power of Attorney. The object at this point is not to grow the accounts or hold on so tight that there is a big pile of money left at the end. The object to be a good steward and make sure the patient, and the care-giver get what they need.
Elizabeth and I have already executed Durable Power of Attorney for each other in case of a terrible accident or illness. But after 35 years of marriage we think we are pretty safe doing it. Again, Durable Power of Attorney is essential in eldercare, but it must be approached carefully and thoughtfully and with the advice of an attorney.
Well there is plenty more to talk about. I’m resisting the temptation to tell stories and reminisce or to relate horror stories we’ve experienced or heard from other caregivers. We’re trying hard to keep this fact based as much as possible.
But we’re getting long again in this segment. Next time we’ll talk about Hospice Care and what you can expect as your loved one approaches the end of life. We’ll try to talk a bit about palliative care and the end of life. That’s a lot to squeeze into 20 or 30 minutes but we’ll see what we can do.
Until next time, Please remember to send your questions and comments to us at AChristianEnding.com
This is Deacon Mark
May God grant you many, many years.