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Hiraeth and dementia

Kay H. Bransford:

Kate Swaffer is living with a diagnosis of dementia and has eloquently taught me and given me a better understanding of what it’s like to be on the other side of this journey. I immediately connected with this post that speaks of the term “hiraeth” which means homesickness for a home in which you can never return.

On every visit with mom, I interact with 2 or 3 residents who are trying to get “home.” Some want to know if I can give them a ride, some want to know when family is picking them up, and some just want to know where home is. Shared.

Originally posted on Creating life with words: Inspiration, love and truth:

IMG_3655This was brought recently to my attention via social media, either Facebook or Twitter, although I can’t remember which one. I had not heard of the word, or did not remember it, which is not the issue here, but the meaning of the word has been playing with my heart-strings ever since.

Initially it brought me to tears, as apart from a couple of cousins and three elderly aunts whom I love dearly and speak to reasonably often (although I feel a bit guilty, as it is never often enough!), my husband and two sons are the ONLY family who support me, or are connected to me in any meaningful way. Some of my family no longer even speak to us at all, and have removed themselves and their children from our lives. It feels like the word hiraeth also applies to this.

Their loss, not mine/ours is easy to say, bt…

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Navigating Care with Your Siblings

Family2004Every family has some conflict. When my parent’s health started to fail, it took time for my siblings to catch up to me. I was the local one who spent a lot of time with my parents as an adult. I noticed changing behaviors and memory issues. Every attempt to help my parents was poorly received, even when they called me to ask for it. By the time my siblings started to see the issues, I was resigned to silently watch and would respond when the hospital or the police called me. When my siblings started to see how poorly my parents were doing, they had to talk me back into trying.

Together, we set up interventions. All four adult children brought in lunch at my parent’s home and we shared our concerns together. Both times, our parents were polite but rebuffed the suggestion that they should consider any lifestyle changes. During this time, we set up monthly phone calls to touch base on issues. We used a free conference call site called TalkShoe.

When the retirement community threatened to terminate my parents continuing care contract, we moved to weekly calls as we prepared to navigate a very difficult period. We have had disagreements over everything from care choices, the disposal of assets, and even the menu at my dad’s burial. Early on, we set up rules of the road to help us. We agreed that:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

With four of us, you would think we would have had issues with voting. If we found the topic got a little too heated, we would table an issue and plan on date and time to reconvene to discuss it.

I had already stepped in and had collected information (using the MemoryBanc Register) on most of their accounts after they signed two contracts for home repairs and one was predatory. I was on the bank account and was monitoring cash flow and bill payments in the background to ensure they were not victims of fraud. We had to prepare and sell their second home, down-size furniture, sell cars, distribute family heirlooms … and figure out how we would manage and share the load because it was too much for one person to bear.

We made up a list and assigned roles. Here is the guide we used to help:

Care Giving Role Duties Responsible
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal/Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal/Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

We were able to work through a host of issues that could have shattered any family. Luckily, we were able to use this to build stronger bonds. We still schedule regular calls to review finances, mom’s care, and discuss any ongoing issues, but now we are all on the same page and able to focus on doing what is best for our mom.

This breakdown and how we navigated won’t work for every family, but I hope it will give you some idea’s on what might work for yours. Shared. 


Hindsight is a Wonderful Luxury

momsunglassesday2I’m reusing the words Remember Me shared with me because in the cycle of grief and guilt caregivers seem to float through endlessly, hindsight is truly a luxury. We often saw things that should have been a warning sign, but didn’t recognize the significance. We may have been sure something was wrong, but didn’t know how to proceed. We tried to help when we saw things failing, but my parents were not interested in the help and usually appalled at the suggestion it was needed.

I finally started to understand how much the independence meant to them when we had to come in to help because they were unable to manage any longer. Because of the dementia, I wonder if my parents just never recognized, understood, or believed that they were failing to manage in their day-to-day lives. Dementia is torturous in so many ways to both the individual and their loved ones.

I’m a huge advocate of goal-setting and one of the things Remember Me recently posted was a list of aspirations to develop a life alongside being a Care Partner.  As I struggle to direct the ever-changing team in place to help care for mom, I think coming up with a similar list will do me and mom a lot of good. Encouraged. 


The Lingering Nuisance of Tax Issues

taxesI have seen several reports that discuss that symptoms of dementia can be present up to ten years prior to any type of diagnosis. I know that it took our family several years to finally get my parent’s diagnosed officially. That was well after my siblings and I held two interventions to share our concerns around our parent’s living and driving arrangements.

We noticed behavioral changes, witnessed problems handling home maintenance, and a growing number of dings on their car bumpers. We were primarily concerned for their health and welfare.

Today I had to follow-up on an state tax notice about returns not being filed. The notice is for returns related to my mom’s antique repair business. It’s also covering the period of 2005. I know in the past my sister had to chase down tax issues for my parents.

Two weeks ago I placed the first call. After navigating the phone system, I finally reach a person who tells me they can’t help me because they need a copy of the Durable Power of Attorney giving me the ability to represent my mom. I faxed it in and followed up today to resolve the issue. After 40 minutes in a variety of queues and in speaking with two different divisions of the state tax department, I finally reach the person who can help me resolve the issue.

When she starts asking me for my mom’s address and phone number, I let her know my mom is in the care of a dementia community and is unable to speak on her own behalf. I also tell her I have only been doing mom’s taxes for 2 years and never gotten a notice until now.  I tell her that we no longer have copies of the 2005 taxes because we followed the guidance that says you keep them for 7 years. I just ask her what I need to do to resolve the issue.

The representative is very kind and asks a few follow-up questions. She tells me she is going to resolve this issue. Apparently, mom was sending in the money, but never sending in the Sales and Tax Use reports that were to be filed with her payments.

I wish there was something I could have done when I first noticed problems, but I’m not really sure it would have changed the outcome. I am just glad this was a relatively easy lingering tax issue that is now resolved. Completed. 


It’s YOUR turn to visit!

fingerpointAs the primary family caregiver, I will fess up to thinking and possibly even saying this to my siblings. I know when they visit, I have usually taken the opportunity to escape from the day-to-day and ongoing management of mom. It’s freeing to know that someone else is in town to run down an issue with the nurse or could drive over if something needed to be addressed immediately. I couldn’t even begin to count the amount of times I have visited mom on my own. When my siblings visit, I have used it as an opportunity to take a mini-break from caregiving.

However, what I learned on my sisters visit, was that going with my sibling was a way to reconnect with mom and my sibling. Not only did we have a great visit with mom, we had a great visit with each other.

Thank you to Belledelettres who commented that instead of  “it’s your turn to visit” we should think instead “let’s go and visit together”. Just maybe, they will visit more often. Wondered.


Flirting with Normal

brunchwithmomThis past weekend my sister came to town to visit with Mom. On Sunday, we took her out to brunch. It’s been a while since I have gone to a sit down restaurant with mom. The addition of the wheelchair and mom’s declining health made it difficult for me to confidently have an outing with mom alone. I knew it would be easy to manage with my sister, so we made a reservation for brunch.

After we were seated, we just chattered away. My sister talked about her jobs as a waitress when she was in high school. She remarked that she hadn’t thought about those jobs in many years, it must be the visit home that sparked the memories.

Two of mom’s favorite meals are fried chicken and waffles. We were pleased to find “Chicken and Waffles” on the menu so we could get her both! We were surprised by how much she ate.

While my mom didn’t talk very much, just having all three of us at the table was pleasant. My sister and I could keep the conversation going and my mom was tickled by a few of the stories we could share. Life for a few minutes felt very normal for all three of us. Delighted. 

transportchairDear Ellen: Thank you for loaning me the transport chair. We made good use of it and I know it will come in handy for many more trips. You are a blessing to so many people. <3

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Three Technologies to Share with Grandparents

SnapchatToday is National Grandparents Day. In honor of the occasion, I asked my kids to help me write a story for Dot Complicated. To find out which 3 tech tools you should consider, check out this story.

Thanks to my kids for helping me write the story and coming up with pictures. Appreciated. 


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