In the world of Alzheimer’s, a woman and her purse (and a man and his wallet) aren’t easily parted.
Mom carries her purse everywhere she goes and sleeps with it under her pillow or worn on her shoulder and hugged tightly to her side under her covers.
Rummaging and rifling through the contents of her purse is a favorite Sundowning activity (for more information on Sundowner’s Syndrome, click here). I keep a baby monitor next to my bed and can hear and see her zipping and unzipping her purse at all hours of the night – over and over again. I can see her happily stumbling over the same piece of mail and delighting in reading it out loud as if for the first time.
The contents of her purse may vary a little bit, but I can count on a few things. She’ll probably have five or six combs, her glasses in a familiar blue case, a few colored pencils absconded from her coloring set, her favorite pieces of mail, three or four tubes of lipstick, and Kleenex…wads and wads of Kleenex. And, for good measure, there may even be a roll of toilet paper crammed in there. It’s a harmless security thing. Her purse filled with familiar objects brings her a little peace and reduces anxiety.
Some church and community service groups even provide “rummage bags” or “rummage boxes” for memory challenged residents of local nursing homes, as the act of rummaging through the contents of the bag provides a sense of calmness and occupies them for hours (see related article filled with ideas here).
The paranoia associated with Alzheimer’s causes her to believe with all sincerity that people will try to steal her stuff. So precious is her purse, Mom will hide it to keep its contents safe. Now that she lives with me, I know where her favorite hiding places are located. When she still lived in her apartment or in her own home, sometimes she hid the purse really well. Really, REALLY well. For times like that, we found a handy little device called a Tile which helped us locate her purse using an app on our phone. We give it our highest endorsement and heartily recommend it for anyone dealing with an elderly parent…or someone like me who misplaces her car keys more often than she cares to admit.
Back to purses…
Sometimes my mom is hilarious. This was one of those days. Not long ago, I posted this on Facebook. I hope it brings you a smile too.
Tucked in our stack of mail when we returned from our little trip to NYC, Wayne and I found a letter from the Veteran’s Administration. Not too unusual. As I am Brad’s power of attorney for healthcare, and Wayne his power of attorney for finance, we are used to receiving communication from the VA.
This letter, however, was telling us that Brad’s income for 2016 may have been too high to qualify for the benefits he received in that year for his care at the VA. Brad had spent quite a bit of time under the care of the VA in Milwaukee, including surgeries, radiation and chemotherapy treatments, oodles of labs, x-rays, scans, medications…you name it, he had it in 2016.
I think my heart skipped a beat when I read and re-read the letter.
When I first took Brad to the VA, he had been bedridden for several months and was growing weaker each time I saw him. He hadn’t been employed in several years, had just a few hundred dollars in cash to his name. He didn’t have a car, and Mom was providing the roof over his head and the food he consumed. We were aware that he had a modest IRA account funded by a previous employer, having learned that when we were working with Mom’s financial planner, who also managed Brad’s funds. However, in sorting through piles of statements and unopened mail, and probing into his financial affairs, Brad seemed otherwise destitute.
Thankfully, when I took Brad for his first appointment at the VA, the financial counselor indicated that he was qualified to receive care. I mentioned the IRA, but he said that wouldn’t be considered with regard to his qualifications – it wasn’t considered income. So, Brad went through nearly a year of excellent care for the cancer(s) they discovered. Over that period of time, Brad gradually lost the strength in his leg muscles and became dependent on a wheelchair.
With mobility issues in mind, it became clear that Brad could no longer safely live in Mom’s home (especially since she had Alzheimer’s and we were going to sell the house and move her to live near us). So we cashed out Brad’s retirement account in order to pay for the nursing home care Brad would require once he was discharged from the hospital, not thinking about the “income” restrictions associated with his VA care.
Next came the “spend down” phase leading toward being eligible for Medicaid. To assist us in this process, we retained an attorney who specialized in elder care law. She suggested that before the nursing home got all of his assets, we spend money on a car which would accommodate Brad’s wheelchair (so I could transport him to and from doctor appointments and such), pre-pay Brad’s funeral expenses, and set aside a portion of his funds in a Wispact special needs trust account – this account would preserve some of Brad’s retirement funds to help us pay for future necessities not covered by Medicaid or the VA. For instance, Brad does not qualify for dental coverage through the VA, so we can pay for any dental work. When he needs items of clothing or toiletries, we can purchase it for him and be reimbursed by his Wispact account.
Once again, I am thankful for my husband’s careful diligence in financial record-keeping. He spends a lot of time entering data into spreadsheets and scanning receipts and invoices. I called a phone number provided within the letter to receive a little clarification. Turns out my hubby’s paper trail will come in handy; we basically have 60 days to produce documentation of how we spent that money on Brad’s behalf. The allowable expenses will adjust his “income” and reduce what he will owe the VA. It looks as if we will end up reimbursing the VA some funds for co-pays, but not as much as he would owe if we had not kept these records.
This little note is not a rant of disappointment with the VA medical care. Not at all. We’re so very grateful for the care he is receiving. It’s not even a complaint about our surprise in finding out we would have to pay for services received. Rather, it is a reminder to those providing healthcare or financial oversight for loved ones to keep careful financial records and to make wise choices in how you use funds in order to preserve funds for future expenses. No less important, make sure you have any legal documents in order, including power of attorney.
Many times in my caregiving journey for my mom and brother, I have no idea what step I need to take next. The path sometimes seems dark and uncertain. But God is faithful. He always gives wisdom in our decision-making, provides for our needs, and sheds light on the next step we need to take.
I pray that by sharing this experience, God may use it to shed light on someone else’s next step in their caregiving journey.
Caring for my Momma in our home was a relatively easy decision, although the path toward making that decision was anything but as it took many twists and turns along the way. From the earliest days of traveling back and forth between Fitchburg and Milwaukee, to moving her closer to us, God has always been faithful in shedding light on the next step we need to take in our caregiving journey.
At first, we wanted to make an addition on our home for her – a first floor granny suite. Our local senior center’s social worker, along with our elder care law attorney, both agreed that this sort of building project was an appropriate use of her financial resources. Should we ever have to “spend down” her resources in order to satisfy Medicaid guidelines, they assured us that the expense would be allowable and justifiable. So, we did a little homework by getting an estimate for making an accessible one-bedroom plus a bath addition. To say we experienced “sticker shock” would be an understatement.
I was disappointed. Very disappointed. I cried…a lot.
Having nixed the expensive addition idea, we decided that keeping Momma in her nearby senior apartment under our close supervision was still the best option. With the assistance of family, an occasional friend, 11 hours of professional caregiving a week, and well-placed wi-fi cameras, we made it work. Then, about five months into this arrangement, a recurrent battle with a urinary tract infection resulted in hallucinations, alarming behavior, and plenty of evidence that Momma needed more care.
It seemed impossible to keep her at our house. So many questions and not enough answers. Where would she sleep? Our bedrooms were on the second floor. What if she wanders in the middle of the night? A sunken-living room became a potential fall hazard. How would she bathe? We only had a small half-bath on the first floor; it would barely be walker-assisted navigable.
There were just too many obstacles, so I moved in with her to help with daily needs.
Well, after 8 months of that, Momma took an ambulance ride to a nearby hospital and life changed once again. As I stayed with her in her hospital room, painfully aware that she couldn’t go back to her apartment, I prayerfully turned the various options over in my heart and mind. My husband was doing the same thing. When we sat down to chat about it, we realized we were on the same page. We were going to make room for her in our home. We would make it work by turning our dining room into a bedroom for her. You can read more about that here.
As I continue to blog and share my journey in caring for my mother, I am learning that I am not alone in making difficult decisions related to caring for an aging parent. I have a number of friends who are caring for one or both parents. Some have decided that their loved one would receive better care in a retirement home, assisted living, or skilled nursing facility. I support them in that decision, knowing it was reached prayerfully and with great deliberation.
As a daughter seeking to provide compassionate and God-honoring care for my mother in my home, I found the biblical insight of a podcast I listened to today to be very helpful. The realization that I may need to make a decision in the future that would mean my mother would no longer be cared for in our home becomes more intense with each day that passes. I thought I’d share the link to Desiring God Ministry’s “Ask Pastor John” series on the subject of “Retirement Homes and Caring for Aging Parents.” The information he shared confirmed in my heart and mind that I am doing the right thing for the right purposes and, should her needs change, I will not be dishonoring my mom by placing her in a facility where she will receive appropriate care.
I encourage you to click on the link above to access the podcast, but let me leave you, dear reader, with a tiny bit that was especially encouraging to me.
Are we ready to make sacrifices for our parents? Or are we resentful that they are becoming a burden? That’s the real test. All of this may or may not mean that the parents come to live with us or near us. There are innumerable variables that make one situation right for one family and another situation right for another.
I’ve mentioned my brother a few times on my blog now, so thought I should reach back in time to almost a year ago where I introduce him on Facebook. I’m Brad’s health care power of attorney but, more importantly, his sister. So, I got involved in my brother’s business when it became very apparent to me that there was more than laziness keeping my brother living as a recluse in my mom’s spare bedroom. No work for 6 years (he’ll admit being lazy at first about finding work after losing a good job). No income and no ability to handle his own financial affairs. Diabetic, but doing nothing about it. No time spent with friends. Just sleeping, eating, smoking cigarettes in the garage, and watching TV. One day in April of 2015 I announced to Brad that I was taking him to the VA to see if we could get him some help for some very obvious (to me) health problems. He was so sick and very willing to go. That began a year of uncovering and treating several significant health problems – including cancer – multiple cancers, one of which had already traveled to lymphnodes.
With the help of some pretty amazing doctors at the VA Hospital, Brad fought his cancers and won. But the fight was hard on his already frail body. It soon became clear he could not go “home” again. Brad has since settled in nicely in a skilled nursing facility near my home. Visits with the doctors at the Madison VA are not quite as frequent. We continue to routinely screen for skin cancer, treating when necessary. Because Brad is not a good candidate for another round of chemo and radiation, we are no longer actively screening for the return of colorectal cancer via invasive tests and medical imaging. We’re doing what’s referred to as “watchful waiting” – waiting for symptoms of cancer to return and planning to provide comfort care should his cancer return.
Facebook Journal Entry – May 2, 2016
Meet my younger brother, Brad. I would describe him as a generally laid back, genuinely nice guy. Single. Never married. Former trucker. His happy place in life is sitting around a campfire with a few good friends after a day of hunting or fishing. It has been a few years since he has felt well enough to be in his “happy place,” or anywhere besides his bed.
Lately I’ve been accompanying my brother to the VA hospital once or twice a week, sometimes spending an entire day there, depending on how many doctors he needs to see. My heart is filled with compassion for my brother. It has truly been a rough year for Brad. So many ailments and serious health concerns previously identified by the Milwaukee VA (Zablocki) have been addressed. Now, as we transition his care over to the Madison VA, -Brad’s new care teams have been getting to know him – one clinic at a time: Retina Clinic, Geriatric Clinic, Dermatology, Oncology, Urology, Podiatry, and Neurology. Brad and I are very grateful for the fine care he continues to receive as a military veteran.
Today’s appointment was with his new neurologist; a straight-shooter who does not mince words. Nothing was sugar coated. Sometimes I would steal a glance at Brad to see how he was taking the brutally honest information. There was very little in the way of encouraging news today. I had mixed feelings; part of me wanted to cry, the other wanted to hug this doctor for his forthrightness and practical advice.
Brad has battled cancer courageously and without complaint. In this regard, except for some skin cancer yet to be excised, he is doing well. The sad news is that he will never regain the use of his legs. Diabetes and chemo and radiation therapy have taken their toll. No amount of physical therapy will help him regain the lost muscle mass. The wheelchair is, and will continue to be, his everyday companion.
It pains me to see my younger brother living in a nursing home. I want him to live with me and I want to help take care of him, but my house will not accommodate his mobility needs. Due to mom’s physical problems and her declining mental acuity, living with mom is not an option either. Thus, Oregon Manor is his new home
Mom misses Brad too. Each and every day she hopes he is coming home to live with her. The mom in her wants to take care of her boy. Today, after Brad’s appointment, I brought him to Mom’s apartment for a little visit. Wayne prepared dinner and we sat down to eat together as a family. This meal together brought mom joy and gave Brad a different sort of dining experience than he has in the nursing home. Time with family. Precious.
After dinner and a brief visit, it was time to get Brad back to his abode. Together, we’re getting the hang of this transportation thing. I’m even learning to wrestle his wheelchair in and out of the trunk…not with the greatest finesse, but it’s getting easier.
Our ride “home” was quiet. There was a lot for both of us to absorb following today’s visit. With Brad situated comfortably in his room, I left to go spend a little more time with mom. Once in the car, however, the enormity of the doctor’s words today registered in my heart and hot tears began to flow. It was another one of those moments in life where I knew I needed to pray, but the words would not come. But God knew what was on my heart and He heard my unspoken prayer.