The Heartaches of a Spenddown

Right now Mom's room doesn't seem right without Mom in it, but in years to come the laughter of her great-grandchildren will fill the empty spaces as we host family gatherings here.  The church pew to the right is from the church where my parents were married in 1946. Memories old and new, memories yet to be made!   

During the years my mother lived with us, her monthly income was nearly adequate to provide for her needs, and so she still had a small but comfortable sum in reserve when she entered nursing home care. This we began "spending down" in anticipation of an eventual need to apply for Medicaid.

When you don't have a whole lot to start with, it doesn't take very long to spend it down at the rate of about six thousand dollars a month for nursing home care, doctor visits, and prescription drugs. The dreaded Medicaid application process looms before us, and although my head tells me everything will work out, my heart tells me differently.

When we are in the process of losing someone we love, the material blessings they leave behind gain emotional value. For example, I am writing this post while seated in a comfortable chair in the spacious addition to our home that my Dad's careful saving made possible for Mom. She spent twelve years in this warmly lit, lovely space, was happy here, and we were happy to have her. My dad would have been so pleased.

He was brave, my dad. At age 50 he knew he had not saved enough money to keep my mom secure, should anything happen to him.  He went to back to school for the better part of two years and became a Federal Meat Inspector. The savings he accrued in the final 15 years of his working life helped provide a secure, handicapped accessible place for Mom when she was diagnosed with Alzheimer's. I will have this space as a testament to the beautiful way God provided for my mom through my dad.

A spenddown, however, is the opposite of comforting.  Mom is now paying other people approximately five times the monthly amount she paid me as per the care agreement* our attorney drafted when she decided to live with us. Again the heart/head disconnect; this feels unfair, but my brain works well enough to understand the costs of providing 24 hour a day care in a facility. There are eight or ten aides on each of three shifts at the nursing home, and this doesn't include the charge nurse, administrator, or cooking staff.  The amount we pay for care at this small nursing home in a rural community begins to look like a bargain...when I use my head, that is.

My heart sees it differently. It feels as though my mother's remaining financial assets are evaporating into thin air.  She is receiving services for her payments, but, probably because I was her primary caregiver for so long, I feel usurped.

It's important to recognize these emotions and to allow my Christ-directed mind to take precedence over my emotion-driven heart. Otherwise, some strange behaviors can erupt, because emotions can't be kept in a box.  They will escape their confines and influence seemingly unrelated situations so that we act, in a word, weird. The past few months I have been at best, stingy, and at worst, irrational regarding matters of money, and it is because I've confused losing an earthly inheritance with the loss of my mother. The one can be released without regret, but the other is an eternal connection through Christ.  I don't have to mourn my mother's slow passing away as though I had no hope of seeing her again when we are resurrected in Christ. Our relationship will evolve but it won't disappear.

Meantime, I'm going to do my best not to act weird about money.  It'll be a challenge, but I think even in the face of a Medicaid spenddown, I can do it, because the Lord is my help.

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Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.  Matthew 6:19-21

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*If you consider becoming a primary caregiver for a loved one who is infirm, it is highly recommended to confer with an attorney who is an elder law expert. Membership in the National Academy of Elder Law Attorneys doesn't guarantee expertise, but it is a starting place to help you find someone who keeps up with Medicaid laws and is an advocate for those who have special needs and their loved ones. You can use their search tool to find an elder law attorney in your area.

P.S.  My blogger friend, Georgene, from over at Living On Less Money, asked why it is recommended to see an elder law attorney when one becomes a caregiver for a loved one who is infirm. Here are the reasons we spent several sessions with a local attorney who had worked for Medicaid and was on the board of a local nursing home:  1) I needed Durable Power of Attorney for health care and financial needs for Mom.  This is a legal document that, as far as I know, needs to be drafted by an attorney.  2)  Mom was adamant that she would pay me a salary, but we worried that anything she paid me would have to be paid back in a Medicaid recapture of funds. The attorney assured us that if both parties desire a care agreement (she called it an in-advance contract) that this is acceptable to Medicaid.  That contract was very specific as to the services that would be provided Mom (right down to washing her windows at least twice a year!!), and was written to protect her rights.  The salary she paid me was small, but helped defer the financial loss I incurred when I quit my teaching job to care for Mom.  3)  Mom wanted to create a living will.  She does not want to be put on life support.  We needed the attorney to create that document.   4)  Mom wanted to set aside monies for funeral expenses, which are safe from a Medicaid spenddown, and had no idea how to go about this. She ended up purchasing a prepaid burial plan, but this isn't always recommended because if a funeral home goes out of business, the investment could be lost. We needed the attorney's advice on how Mom could safely set aside money for these expenses.

When we were in transition into the role of caregiver and patient, our emotions were running high and we weren't necessarily thinking clearly.  We had many decisions to make with Mom shortly after her Alzheimer's diagnosis.  Building a mother-in-law addition was the most monumental of these, and our attorney led us through this process in a way that blessed Mom and protected her rights as well as ours.  The attorney's suggestions were invaluable.  I don't know whether we would have had courage to move forward with the addition without our attorney's guidance, but it proved to be a wonderful blessing for my mother.  No one (but the Lord) could have anticipated that she would spend twelve happy and peaceful years with the security of having us next door whenever she had a need.

Hope this clarifies the reasons I recommend the guidance of a competent attorney who has an interest in elder law.

A Difficult Passage

I am grateful to the Lord for His gentle guidance as I navigate the release of my mother into His hands. Mother/daughter relationships are multi-faceted, and as my mother's only child, every layer of connection between us has been emotion-filled and sometimes, tangled.

Our twelve-year-and-counting journey through Mom's Alzheimer's involved a role reversal so that she essentially became my child. But the other connections remained viable, like electrical pathways that still conduct power even though there are no longer receptacles at the end of the lines. Mom could no longer "mother" me, but she was still my mother. I still had my mother, but grieved the loss of relationship with the mom she once was. We have traveled a complicated, messy, sin-on-both-sides journey together, but the pathway has been lit by God's grace.  

A paraphrase of Psalm 23 has been my theme: "Yea though I walk through the valley of my mother's Alzheimer's, I shall fear no evil, for thou art with me..."  

The Lord has been with us.  

I did not want Mom to go to a nursing home, but I am finally seeing God's wisdom and love behind this unwanted event. It has been my lifelong job to support and help my mother, but she has embarked on a final journey that she must travel alone; I can't die with her. In His kindness and love for both of us, Mom has been provided multiple, competent caregivers who will tend her many needs on this last leg of her life journey. I have been allotted a gentle time of weaning from the heavy burden of responsibility I've always felt toward my mom--even before her Alzheimer's--as her only beloved daughter.  I have always worked hard to make things right for her.  That this separation is occurring before she enters into the Lord's rest is also a blessing; it allows me time to set my face toward a future that will not include either the burdens or joys of my mother's presence in my life.  

We need to pray more for our loved ones who are in nursing homes, even as we do the heartrending work of separating ourselves from the day to day facts of responsibility for their physical and emotional needs. Finding a balance between bringing Mom's needs before the Lord in prayer and yet releasing those needs to Him is an ongoing challenge. 

Whenever I begin to suffer panicked heartbreak over the overwhelming pathos of Mom's suffering, I have learned to suspect that I've listened to the enemy's whispers. God has been with Mom just as He has been with me.  She needs my love and prayers, yes, but an overwhelming emotion of pity is unwarranted, and beyond that, it cripples. The intensity of such an emotion can't be sustained and would result in my withdrawing from Mom, which would be too bad, because I'm convinced that the Lord has blessing for us still, here on this final stretch of our Earth-walk together.

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 Then the Lord said to me, “You have made your way around this hill country long enough...

The Lord your God has blessed you in all the work of your hands. 

He has watched over your journey through this vast wilderness. 

These forty years the Lord your God has been with you, 

and you have not lacked anything.

Deuteronomy 2:3, 7

What I Didn't Know....

I want to share some things I wish I'd known before we placed Mom into nursing home care back in August.  To avoid a book length entry, I won't share everything I didn't know--just a few key points. Here's what I wish someone had told me:

1.  Don't look upon the nursing home placement as being the end of your caregiving journey, instead, think of it as the beginning of a new phase of caregiving. Transitions are difficult, and there will be challenges.  

2.   For a time, your loved one will need you more than before.  This is temporary, but the time commitment needs to be accepted and not viewed as something unusual. The nursing home administrator told me that the average time  for patients and families to adjust to their "new normal" is three to six months.

3.  You'll need to be a patient advocate in the same way that hospital patients need someone who knows them well to serve as a liaison between doctors, staff, and patient. There will be miscommunications, there will be upsets, and there will be a learning curve for those providing care for your patient.  Be kind, be patient, and be present.  

4.  Show up at different times of day. If possible, eat  a meal in the home's dining room with your patient once or twice a week.  Observe your loved one's reactions to various situations, and don't be afraid to make suggestions.  

5.  Recognize that the challenges of this transition are temporary, and that you and your loved one are headed toward a more comfortable time.  

6.  Couch any concerns in encouraging comments about positive things you've noticed. 

7.  As a caregiver, allow yourself to grieve. My emotions upon driving away from the nursing home after we'd settled Mom in her room that first day were remarkably similar to how I felt when we left our kids at their college dorms. Don't let people tell you that you shouldn't feel sorrow. Honor your years of service to your loved one, be much in prayer, and inquire of the Lord about how to release your loved one into the care of others (more about this next post).   

My mother has been in the nursing home four months now, and the stresses of those first difficult days are beginning to ease for us. Although Mom is in the late/middle (or early end) stage of Alzheimer's, she has adapted to her new environment and is no longer calling my name every few minutes as she did at first. The staff has gotten to know her, and I now feel comfortable missing a day or two of visits as necessary.

Here's lovely song by Matthew West entitled Only Grace that describes the emotions of this new phase of my life as a caregiver. Give it a listen if you have time--I hope it ministers to you as it has to me.

Note--the Youtube ads that precede the video range from annoying to mildly offensive. Just click "skip ad..."  

  

Dangers of Food Aspiration in Elderly Dementia Patients

I want to pass on a word of warning from my blogger-world friend, Jennie, whose sweet Alzheimer's  mom recently entered into the Lord's rest. Jennie knows that my mother is in a nursing home, and wrote a thoughtful email encouraging me to monitor Mom's mealtime habits as her Alzheimer's progresses. Here, with Jennie's permission, is her quote about the care that needs to be taken with elderly dementia patients to help them avoid aspirating food: 

I don't think people understand (I didn't) how often oldsters succumb to pneumonia due to aspiration of food. Some people even privately hire people to come feed their loved ones at meal times. The aides are hassled and overworked, and just don't take the time to be sure the person has thoroughly chewed and swallowed before they put the next forkful or spoonful up to the mouth. People often also don't understand that one of the features of Alzheimer's is that the brain forgets NOT just memories and other cognitive things but forgets how to walk, how to chew, how to swallow. I think there needs to be more awareness of this and if there is a way for me to get this out there I want to do it.

 Jennie also mentioned an interesting study that has been done on the efficacy of soliciting volunteers to help elderly patients at mealtime in order to prevent choking, food aspiration, and nutritional deficits when patients become unable to feed themselves.  You can find that study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3813467/.

Thank you Jennie, for taking time to help others during this difficult time of grief.  Our prayers are with you.