Tag Archives: long-term care

My novel experience with Alzheimer’s disease – Part 1

Two of my family members were diagnosed with Alzheimer’s or other dementia:

  • My father received a diagnosis at the age of 84 and died of the disease at 89; and
  • Three months after my father’s death, my sister-in-law was diagnosed with mixed-dementia at 65 years of age and died four and a half years later.

With that type of history and personal experience with the disease, I had no choice but to put my thoughts down on paper which has turned into my first attempt at writing a novel. Those of you who have read articles from my blog on an ongoing basis know quite a bit about my caregiver role for my father and my supportive role for my brother’s caregiving journey.  You’re also aware that my work history the past 14 years includes assisted living and memory care work; being a Washington State long-term care ombudsman (advocate for vulnerable adults); and an Alzheimer’s Association caregiver support group facilitator.

???????????????????????????????I’m lucky to have the time and opportunity to work on my craft.  Thanks to my hubby’s generosity, I have no excuse but to write; so I do.  Here’s an excerpt from the very beginning of my manuscript.  I’d like to hear your impressions.  ALL feedback is valuable…

Colleen has just a couple items to purchase at the grocery store, so after picking Patrick up from his morning day program, she secures him in his seat and heads to the mega-grocery store.  “I promise we won’t be too long – we’ll be home in no time at all.”  Patrick doesn’t register any complaints and seems quite content simply sitting and watching the world go by from his seat’s viewpoint.

Colleen is in luck; there’s a parking space not too far from the entrance so she grabs it before any other shopper notices this great find.  With the back-to-school sales in full force, she figured she’d end up in what she calls “the Back 40″ of the store’s parking lot.  “Not this time.  I must have done something right in my life!”  Colleen secures the parking brake, grabs her purse and rushes over to the other side of the car to retrieve her passenger.  “Okay, handsome!  Let’s head into the store.”  Colleen frees Patrick from his seat, and holding tightly to his hand, the two take baby steps across the parking lot crosswalk, requiring other drives to pause in their shopping rush.  As is usually the case in this friendly Oregon town, the drivers were very courteous, even smiling and waving at the two of them.  Colleen is relieved that no horns are honking – a sound that always frightens Patrick.  She and Patrick wave at the drivers, Colleen mouths a “thank you” as they reach the end of the crosswalk, and as she enters the store, she grabs a plastic shopping basket in one hand, and keeps hold of Patrick with the other.

“Let’s head to the toiletry aisle first.  We’re just about out of that bath soap that you like.  How does that sound?”  Patrick breaks into a smile, nods his head, and says, “My soap.  Let’s go!”  Colleen puts one bar in her basket and hands another bar to Patrick and asks, “Would you like to carry this bar for me?”  Again, Patrick breaks into a smile, holds his hand out, takes the bar from Colleen and holds this precious cargo to his chest.

Colleen sees the baby shampoo they need at the end of the aisle and turning to Patrick says, “You stay here.  I’m going to get your shampoo and be right back.  I’ll only be a few seconds.”  Colleen lets go of Patrick’s hand and on the way to getting the shampoo, briefly stops to pick up a couple items, tossing them into her basket.  Now at the end of the aisle, she grabs a bottle of shampoo and places it in the basket with the rest of the items.  Turning back towards where she left Patrick, she says, “Here I come, just as I promised!”  But Patrick isn’t where she left him.

“Oh no, where are you sweetie?”  Colleen quickly walks to the next aisle; no Patrick.  She rushes to yet another aisle; no luck.  “No, this can’t be happening!”  Patrick is nowhere to be found and she doesn’t know whether to go left to the housewares section or right to the grocery section.  Fortunately a store employee notices her distress and asks if he can be of assistance.

After giving the employee Patrick’s physical description, and the fact that he would probably be holding a bar of soap, Colleen and the employee split up, both going in opposite directions shouting Patrick’s name.  In her shouting, Colleen adds, “The time for hide-and-go-seek is long past!  Let me know where you are!”  Colleen makes it to the far right of the store, stumbling into the Produce section, when she hears an announcement, “Colleen Strand, please report to the Customer Service Desk at the front of the store.”

Colleen drops her basket of toiletry items and runs to the front of the store where the helpful store employee and Patrick stand at attention – both with a smile on their face and both giving Colleen the “thumbs up” sign when she reaches them.  “Dad!  I’m so glad this nice employee found you!  I lost you.  I’m so sorry I left you alone.  Are you okay?”

Patrick places his free hand on his daughter’s shoulder and says, “I thought I saw someone I knew.  I was wrong, then I didn’t see you, but we’re together now.”  Patrick looks at Colleen’s hands and seeing them empty asks, “Where have you been?  I thought we were going to shop.”  The store employee agrees to stay with Colleen’s father while Colleen retraces her steps to gather up her basket of dropped items.  She uses this time to calm down, and shaking her head she mumbles, “Note to self: never leave someone with Alzheimer’s alone in a store for even a couple seconds; no turning your back; no getting distracted; focus, focus focus!”

The remainder of Colleen’s visit with her father at the assisted living facility in Eugene, Oregon went smoothly and although she remained a bit shook up for a couple days, her father completely forgot about their grocery store caper.  He even complained that it had been a long time since Colleen had taken him grocery shopping.  In this instance, memory impairment showed its upside – her father completely forgetting the mishap for which she still felt guilty.  Nine times out of ten, however, her father’s memory loss only had a downside because the good times they spent together were lost to him as well.

I look forward to hearing your feedback.  I’ll give you another sample, this one from a couple hundred pages into the manuscript, next Tuesday.


Grandma and Grandpa pods

I read a fabulous article in the “Home” section of today’s Seattle Times newspaper.  It’s a throwaway section that I always read before I toss it into the recycle basket.

Publicity photo of Will Geer and Ellen Corby a...

Publicity photo of Will Geer and Ellen Corby as Grandpa and Grandma Walton from the television program The Waltons. (Photo credit: Wikipedia)

All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?

Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself.  What’s an adult child to do?  If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.

One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites.  Disclaimer: I am not advocating for this company’s product.  I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.

The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000.  This is no drop in the bucket but let’s consider the cost of facility care.  Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012.  I think that’s a very naive figure based on my experience of having worked in the LTC housing industry.  Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services?  Cha-ching!!!  Now you’re looking at double that amount and the cost will only go higher as care needs increase.  But even at only $3,300 per month, that amounts to $158,400 for a four-year period.  See how do-able the pod concept seems now?

Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision.  Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc.  I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.

Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family.  I have to believe that your initial investment in constructing a pod is an investment that you won’t regret.  And don’t forget – the costs for such a project aren’t necessarily out of your own pocket.  Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home.  Just saying.

Sex in long-term care dementia units

Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike.  The attached article is well-worth the read, and I have a few comments of my own to add.


(Photo credit: Wikipedia)

I acknowledge that sexual activities most likely occur in every long-term setting out there.  Consenting adults – even those with varying degrees of dementia – need touch and physical connection.  I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection.  In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip.  Or perhaps a hug and a kiss are involved.  All of these actions are perfectly innocent without harm as long as all touching is consensual.

Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.

What about those patients who are already married to someone else?

English: Gender symbols for homosexuality (les...

(Photo credit: Wikipedia)

It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one.  The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment.  (I think it’s important to not assume that adulterous motivations are in play here.)  Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.

I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet.  And you don’t have to agree with what I’ve stated above.  The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.

One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.”  The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs.  There are no completely right or completely wrong answers.  I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject.  I take comfort in that fact.

Baby steps towards Alzheimer’s diagnosis

Amyloid Scanning Protocols Fail to Get the Nod from CMS.

I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.

Stillness gets us no where.  Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias.  During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.

Evil undercover: Alzheimer’s, Abuse, and the Elderly

Alzheimer’s and the Elderly.

I’m attaching the above article from a fellow blogger.  He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being.  The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.

Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens.  Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities.  Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.

Worse?  Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse.  I know that you and I are quick to say, “Fantastic!  What a great relief that would be if the person no longer lived with his or her abusers!”  We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings.  These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.

These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me.  Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.

That makes me mad.

Long-term care (LTC) insurance policies: Rejection hurts.

An insurance agent from a large, widely-known insurance company recently told me that 50% of all applicants for long-term care (LTC) insurance are rejected.  Boy, with those statistics, it’s hardly worth pursuing, knowing that the hurt of rejection might be in your future.

John Matthews, Caring.com senior editor and attorney gives all of us a reality check:

“No one has a ‘right’ to buy long-term care insurance.  That results in insurance companies refusing to sell policies to people they think are likely to collect on the policies soon, or who might collect for a long time.  If an insurance company thinks the odds are that it might not make money on you, it won’t sell you a policy.”

WOW – that’s encouraging isn’t it?

While doing research for this article, I found the information provided by insurance brokers about LTC insurance was very enlightening.  Apparently many LTC insurance companies will accept you as an insured if you have had open-heart surgery, but will balk at covering someone who has arthritis.  Why you may ask?  I was told it is because the insured with heart issues will die before needing benefits whereas the person with arthritis will most likely become disabled and therefore cost the insurance company too much money in benefits payout.

Wow – that’s depressing, and somewhat maudlin, isn’t it?

I stand by my earlier article, Long Term Care Insurance Scares Me.  Insurers are trying to sell a product for which so few are eligible.  I thought I was scared before.  Now that I’ve done my research, I’m petrified!

Please share your experiences trying to obtain LTC insurance.  Whether you were accepted or rejected – we want to know.  If you were rejected and appealed the insurance company’s decision – we REALLY want to hear about it.

Moving Mom and Dad – or your spouse.

Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine.  Statistics on aging are astounding, and scary.  “By 2020 some 6.6 million Americans will be age 85 or older.”  That’s an increase of 4.3 million from the year 2000.  Time to celebrate – right?  We’re living longer – and in some cases – thriving in our older age.  The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.

The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility.  The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.”  Nice sentiment – but not always possible.

I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one.  Below are links to each of those articles.  I hope they prove beneficial to you.

Deathbed promises and how to fulfill them.

Caregiving: The Ultimate Team Sport.

Selecting a Senior housing community – easy for some, not for the rest of us.

Avoiding the pitfalls of selecting Senior Housing.

Adjustment disorder: a long-term care facility side- effect.

Be an advocate for your aging loved one.

Visiting a loved one at a long-term care facility.

Caregiver guilt.