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Joy is the Decisive Test

joykidThe path for every individual and family is unique in caring for a loved one. Some families have unlimited resources while others have finite resources and must choose from within the options they can afford.

I’m often asked “When is it time to move into a community?” For some, never, and for others the earlier the better. I have seen with my family and with clients that when there is cognitive decline, it can be hard to adapt to a memory care community. Sometimes waiting longer can make it harder.

I am still surprised when I tell others how happy my parent’s were AFTER they were required to move from Independent Living to Assisted Living. I was physically ill days leading up to the move and my mom was incredibly angry. Thankfully, all three of my siblings came to town to help them move from their very large double apartment in Independent Living to a one bedroom in Assisted Living.

The change in my mom was immediate. The smaller world to manage and the view of front entrance to the community gave her something to watch. I was surprised at how quickly they forgot their old apartment.

I do know that sometimes it cannot be the decision of the individual whether or not to move. Sometimes a spouse isn’t ready for the change, or they feel like it is their responsibility to maintain the prior life.

Whatever the circumstances of your decision, I hope that you can consider how much meaning and purpose factors in to the joy your loved one can still experience. Is trying to maintain the former life overwhelming? Might their be other options to fill their day that will bring them joy where they are?

Just remember that you will make the best decision you can with the information you have at the time in which you need to make a choice. Caregiving is hard. Reminded. 

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Is someone taking advantage of a loved one?

familyfraudmemeI see reports about fraud in the family and am never sure who has the right stats. The National Council of Aging reports one set of metrics, and a recent report from AARP says that 75 percent of the abuse is committed by family, friend, or neighbor.

Regardless of the figures, I hope that everyone considers having two set’s of independent eyes on the money. In my family, I did the day-to-day finances, but my siblings had access too, and I reported on the cash flow and expenses. We thankfully, all got along.

For families with siblings that won’t work well together, it might help to look outside the family to set up a way to report on the money. That is one reason I get hired as a Daily Money Manager. I work with the parent, but report to the sibling/financial advisor/estate lawyer. It helps to have two independent individuals with oversight and to provide checks and balances. Hiring a professional can eliminate the conflict that comes with disagreements about money.

I’m troubled as a family caregiver to hear that family is taking advantage of a loved one financially. The story FRAUD in The Family (Feb. 2018) from AARP is a good lesson in the many ways estate plans might fail to serve your best interests.

If you are worried about a loved one, some suggestions include:

  1. Stay in Touch. You will be surprised by what they might share with you or overhear when you are calling. Skype and Facetime are very helpful since they also let you see the individual as well as get a look at their surroundings to know if the home is being maintained.
  2. Understand Cognitive Decline. In general, the processing in our brains slows and most notice changes starting in our 50s. If you are noticing cognitive issues or trouble with bills and managing the checkbook, you can suggest getting some help with the day-to-day finances. Beware of setting up auto-payments since once this is done, most people stop looking at their checking and credit card statements. That is very problematic due to the number of fraudsters and scammers. I have only had 1 client this year that wasn’t being charged for things they didn’t order or want.
  3. Who is in the House? From caregivers that aren’t properly vetted, to renters who are stealing — Understanding who is in the home is important. It helps to take a photo inventory, as well as make frequent and unannounced visits should you find someone is stealing from a loved one.

It stinks that we have to layer onto the loss by bringing in additional oversight and protection. However, it is one way you can ensure your loved one is well-served. Suggested. 

 

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When is caring for your spouse at home the wrong choice?

oldehandsholdigI am invited to provide “Caregiver Academy” workshops around the metro-DC area and get to meet a lot of spouses, as well as adult children who are caring for a loved one. At a recent talk, a gentleman came up to me after everyone left and wanted to talk about how he might be able to better care for his wife at home.

“What kinds of things can I do beside sit her in front of the TV?”; “Why does she insist that she’s showered when she hasn’t for days?”; “When should I start thinking about finding a memory care community?”

I could hear the pain in his voice as he was battling with frustration, fatigue, and the marriage vows he made. I shared with him that I had recently heard and also seen statistics that show how often the caregiver predeceases the person they are caring for. He needs to put the oxygen mask on himself so he can be a good advocate for his wife.

He also started talking about how they are continuing to lead the life they have always lived. They are going out to dinner with friends but she won’t talk and is now eating with her hands. As much as it pained me to lose my parents bit-by-bit, I truly can’t imagine going through this with a spouse. That promise of a retirement together unravels as you try to maintain a sense of normal.

I don’t think there is a right answer that fits everyone. However, what I do know is that you need help be it spouse, partner, sibling, or adult child.

Because it’s easier to see the choices that I made in the rear view mirror, I will always suggest to people that they bring in more help if they can so they can enjoy their original role (spouse, sibling, adult child). The caregiver role can eclipse all others and I regret that a lot of my time was spent as a caregiver, and not her daughter.

  • Are you able to bring in some care for a few hours a day so you can run errands or get to your own doctor visits? There are probably a host of local home care agencies in your area and many have caregivers specifically trained to care for individuals with cognitive impairment and dementia. They typically run from $20 – $28/hour. There are also means-based options for those that can’t afford to privately pay and your local Area Agency for the Aging will be able to tell you more–you can find one near you here.
  • Are there local adult centers that offer classes or activities that your loved one could enjoy? We have senior centers run by the county and day programs run by several non-profits. Don’t dismiss them until you have tried them. They have music programs and run activities that will engage your loved one where they are. I know how much my mom wanted to continue playing bridge, but could no longer.  She quickly engaged in the arts and crafty activities when she joined them.
  • Have you found a caregiver support group to connect with other caregivers? Some even offer respite when you meet. Being able to talk to others who are facing the same issues can provide you with some ideas as well as companionship.

There might be medical factors that make living in a community the right option for you and your spouse, or just your spouse. You just need to find the option that is right for you. They need you to be a good advocate, not necessarily help them with all of their activities of daily living.

What do you think your spouse would want if you had this discussion a decade before it was personal? Wondered. 

 

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I forgot visit or call Dad?

boxofrussellI woke up queasy and guilt-ridden. I was dreaming, or should I say having a nightmare. I dreamt I had forgotten to call or visit my dad in his care community for two weeks. I am not going to try to explain my dream because pieces of it still don’t make sense.

However, as I try to untangle my thoughts, I rationalize that Dad had been dead before Mom and in my dream, I had just lost my Mom. So how was I dealing with my grief over the loss of Mom so much so that I failed to contact and check in on my Dad? How did I exclude him from mom’s funeral?

I said I wasn’t going to try and explain, but then I just tried to explain …. sorry for the “mansplain”.

The aftereffects of caregiving and loss subside over time, but I’m still surprised by the depth and ferocity of the emotions that overwhelm me. I wonder if it’s seeing all the chocolate boxes for Valentines Day that has my parent’s on my mind. Mom used to love Russell Stover’s chocolates. Over time, she lost her love for them and moved onto See’s Peanut Brittle. She would eat it 24/7 and just the smell of it now makes me nauseous. Mom was always a picky eater and was losing weight she couldn’t afford. I was resigned to see her at least eat something she loved.

As I ignore Valentine’s Day believing telling your loved ones you love them should not happen one day a year … I will take some time today reflecting on how lucky I was to have my parents around until their 80’s. Calmed.

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Advance wish planning for dementia can be a godsend to your loved ones

endoflifeFor those of us who are caring or who have cared, we know how many choices we are faced with and many are things never discussed.

I felt like the 20 years of my mom telling me she would never want to live with one of her adult children, meant I should never move her into my home. Even after Dad died and she was struggling. I emotionally bounced all over in considering what was the right next move for mom.

While this isn’t legally binding apparently outside of the state of Washington, at least it is something we can do to help offer more guidance for someone who might need to advocate for us. I did Five Wishes and wrote out a letter in addition to my Medical Power of Attorney, but this document has even more specific choices. The Medical Power of Attorney is legally binding, but I felt like the questions in Five Wishes and my letter would offer some insight if the choices got hairy.

When my dad in a moderate stage of Alzheimer’s is diagnosed with cancer … we believed we made the right choice to move him into hospice care. When mom broke her hip, suffered another stroke and we were asked to lift her “Do Not Resuscitate” order, I felt confident that letting nature it’s course and moving her into hospice care was also the right choice.

However, I know there are a lot of families who are never sure they made the right choice. In hopes of making sure your wishes are met, and to minimize the doubt that your loved ones might have in making a decision for you, I hope you will consider filling this out now.

Dementia Advance Care Directive

It’s easier to make the choices now when there is no diagnosis or decision in front of you. You can ALWAYS revisit, but it’s good to do this years before it may ever be needed. And it will benefit everyone. Recommended.

 

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It’s a “Nothingburger”

NothingburgerIn the early phase of my parents slide into dementia, my dad would use this term a lot. As I flipped through The Washington Post this morning and saw the word in a headline, I smiled as my stomach clenched. I grew to hate this word. It felt so dismissive of my concerns.

While the entire caregiving journey is a tough road, I found the early phase the most difficult. Everyone is uncomfortable as you figure out how the dance will flow. In some families, I see as they freely ask for and accept help. In others, especially when the couple is still together, the adult children are usually shut out.

My parents knew something was wrong with the memory of their spouse, but neither recognized that they too had problems. My dad would usually listen, but my mom would take each statement and debate each point–in most cases I was told to stop lying or making up these horrible stories.

To keep the peace, my dad started to just truncate anything I said by stating “It’s a nothingburger.”

I had to wait for the failures to be called in to help. There were several times they would call me to come help and when I showed up my mom didn’t remember calling and thought it presumptuous of me to think she needed help.

When my mom started repeatedly calling to help get dad off the floor, I would run over. Until the day my husband asked me if I realized that I was prioritizing my parents over my own kids quite often. I was taking my kids to get flu shots and decided that could wait. With that one question, I realized I was enabling my parents by showing up and the next time mom called, I told her to call 911. That trip to the hospital made it clear to all of us that our parents were really unable to navigate through their day. The hospital recognized that both parents had cognitive issues.

Everything did not by any means become easier, however, that incident helped my siblings and I to navigate the next few months. It was at least two more years before my parents were in Assisted Living, but sometimes you have to hit bottom before you can start figuring out how to move forward. Revisited.

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Do your loved ones have an Umbrella Insurance policy?

pexels-photo-100671.jpegThanks to Barbara who asked about concerns she had with wording in a renewed insurance policy. I suggest that all families who are helping or caring for someone with mild cognitive impairment or dementia consider the addition of an “Umbrella” policy.

In a Kiplinger article titled Why You Need an Umbrella Policy, they share that “adding extra liability coverage to your auto- and homeowners-insurance policies can protect your finances from expensive lawsuits.”  Umbrella policies are designed “to help protect you from major claims and lawsuits and as a result it helps protect your assets and your future. It does this in two ways: Provides additional liability coverage above the limits of your homeowners, auto, and boat insurance policies.”

One of my super-powers that I used to my advantage during my parents journey into dementia, was a sense of possible future landmines. My parent’s had auto- and homeowners insurance, but I had a major concern that the might do something that would jeopardize their retirement savings because of their cognitive status. Thankfully, I suggested to my dad that he add an Umbrella policy to their insurance and he agreed that it would be a smart protection given how litigious the world had become.

There was a period of about 3 months when my dad was driving without a valid license. Their doctor had submitted the paperwork to have both of their driving licenses revoked. However, they let me read, then ripped up the notice from the Division of Motor Vehicle that notified them of the license revocation and acted like it never existed. For some reason, they thought only my dad had his licenses revoked, even though they both received the letter (just a week apart). My mom would tell me that if the police pulled them over she would tell them “I was driving but got a cramp in my foot, so my husband took over so he could get me home to take my medication.” Yeah, my parents got really crafty in trying to maintain their status quo.

I was pretty sure the auto-insurance wouldn’t cover them since their licenses were revoked, so I prayed that nothing would happen. If it did, I hoped the umbrella insurance would help protect their assets to pay for the years of care they would be needing.

Later, at a happy hour at my parent’s retirement community, my dad fell over onto a woman and sent her to the ER. Thankfully, she knew my dad and she nor her family pursued a lawsuit. However, I could only imagine how quickly all of their assets could disappear in legal fees and an award.

Two things to do to protect your loved one and their assets:

  1. Contact your insurance agent and have an open discussion about your concerns to find the type of policy that could best protect you and your loved ones.
  2. Contact your estate lawyer. A Trust might be a solution to help protect your assets …. but I’m NOT a lawyer …. so please find a local elder care attorney who can help you navigate the coming years.

Dementia is a cruel beast and it steals so much from the individuals it preys upon, and the loved ones caring for them. I hope the suggestion on how to deal with practical issues to protect your loved ones will help you and your family. Experienced. 

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