Memory loss has been a subject that many readers have written to me about over the past couple of months,  Most discovered during a holiday visit with a parent or grandparent that their loved one was "more forgetful", "less engaged" and "more fearful" than their last visit home.  Several of my readers asked for advice about lessening the fear and confusion associated with doctor's visits or medical procedures.  

One of my LinkedIn friends is Viki Kind. She is the author of The Caregiver's Path to Compassionate Decision Making.  I found this advice on her website and I thought I would share it with you.CARGIVER'S PATH TO COMPASSIONATE DECISION MAKING
When a person with Alzheimer’s or dementia is going to have a medical test or procedure, how can we help the person to feel less frightened and to minimize any suffering? If the patient is struggling to understand what will be happening to them, do a practice run-through and show the person the room where the test will happen. Or find a book with pictures that will help him understand what you are talking about. If the person with diminished capacity is afraid of being alone, you may want to introduce him to the nurses who will be working that day. For my dad, we tape-recorded the doctor’s explanations so he could listen to the information over and over again until he felt more comfortable.

Another thing to keep in mind is that the patient may be experiencing symptoms that affect his or her participation. These symptoms could be pain, side effects of medications, loss of hearing or sight, lack of sleep, an undiagnosed illness and grief, to name a few. Find out what can be done to relieve these symptoms to make it easier for the individual to participate in the process. Ultimately, our goal is to think about the quality-of-life questions from the person’s perspective as he or she will experience the consequences of our decisions.

I am honored to be a recipient of messages from Norm McNamara, a man that I have never met but whose messages from Britain I anxiously await each morning.  He is one of the great Alzheimer's missionaries who, once diagnosed, embarked on a quest to find a cure for himself and all the victims of this and future generations.  In his most recent message he tells what it feels like to be bombarded by grandchildren's questions, the chaos of a home filled with family on holidays, the fear of losing precious memories and the blessed understanding of his wife and caregiver.  Please share this with anyone who you believe might benefit. 

Message from Norm McNamara:  "I wrote this on Boxing day and i hope it goes some little way of explaining how someone with the diagnosis of Early onset Alzheimers feels on such special days, hope it helps, best wishes, Norrms and family xxxxxxxxxxx

Alzheimer`s On Christmas Day

I have nine grandchildren, two of which live in Australia, one who still lives in the north of England, and six who were in the same front room as me on Christmas day. Can you imagine how hard it is sitting there watching your grandchildren, both young and old run riot, when you know that there is such a good chance you are going to forget all of these happy faces? I have absolutely no memory of last Christmas so being sat there wondering how long it would be before I forget this one was one of the most emotional times I have ever sat through. 

The sheer enormity of the situation runs through your bones like shockwaves!! I sat there, trying to smile through complete anguish whilst trying to answer a million questions at once from my darling little ones. It was grandad this? Grandad that? And I have trouble keeping up at the best of times!!LOLL but through all this, all I saw was their smiles and their hopes in their eyes, I could almost feel their future mapping out in front of them, so much to look forward too, so much to do and so much to SAY!!!LOLL 

Just then, a hand slipped into mine and when I turned it was my “Angel” Elaine who always seemed to know when I was struggling a little bit. She gently squeezed my hand and smiled at me just at the point where I thought I was going to collapse into a heap, sobbing and upset. I smiled back and nodded at her, saying in my small way I had just caught up with myself and was ok for the time being. Elaine is my tower of strength and without her and my family I wouldn’t have the courage to do what I do now. 

When you have been diagnosed with Dementia/Alzheimer’s you don’t think about Christmases, weddings, births ECT, in fact you don’t think about much at first because your mind is in such turmoil. Being diagnosed with early onset and knowing you have it can be a curse as well as a blessing. The blessing is that you can spend precious time with your loved ones and your friends, you can cherish every moment of the day, and in my case I can continue to raise awareness to this awful disease and hopefully be around when the stigma that goes with it is totally eradicated and a cure found. 

The curse is knowing you have it, which is sometime`s just as bad as having Alzheimer’s. Along my travels in life I have met someone who had a brain tumour and survived. I have met a few who have been diagnosed with Cancer and now look the picture of health. I myself 16 months ago had to have an operation for a serious Hernia which had its complications. The surgeon told my wife Elaine and me just before I went to the operating table that I had less than a 10% chance of survival because of my heart problems so if we needed to say anything now would be a good time, I survived!! 

But!! I have never met ANYBODY YET who has survived Alzheimer`s!!! NOT ONE SINGLE SOUL!!! Can you imagine the frustration that runs through me when you hear of certain medical bodies who will not put patient before cost??? Can you imagine the frustration at knowing that millions still think its and elderly disease and not a disease of the brain? 

All these things and more just give me the drive and determination to change things. But most of all, the thing that drives me forward more than anything is the look of hope and expectation in my grandchildren’s eyes!! The sheer innocence of what is yet to come and the longer we can keep that innocence in their eyes the better!! This is why a cure must be found and found soon. I don’t want my grandchildren or anybody else’s grandchildren going through the horrors of seeing their grandmothers of grandfathers succumbing to this horrendous disease. 

I mentioned earlier about never having met anybody who has survived this disease, and unfortunately that statement is 100%true, but I would like to introduce the first person who WILL Survive it, and that person will hopefully be yours truly, myself, and thousands of others who come after me. The time has come now to raise our voices and make 2011 the year we all survive. Let’s hope and pray this is the year that everybody who is connected in some way with this disease see`s an end to the turmoil and destruction this illness brings. 

We Must Live In Hope 

Where There Is Hope, There Is Life 

Very best wishes, Norrms, Elaine and ever increasing family!!LOL xxxxxxxxxxxxxxxxxxxx"

I will do all that I can to help Norm win this battle.  Please help.




Posted by: Kathy Harmon on 9/29/2010 | 1 Comment

My friend, Nancy Vest, shared her thoughts about the decision she and her husband made to bring his parents (pictured below)  to live with them more than twelve years ago 
                                                                              

My in-laws are 90 years old. They have lived with my husband and me for 12 years in an “in-law” apartment that was built as part of our home. We thought long and hard about whether Baby Boomers like us--we don’t have kids and we live pretty independent lives-- would mesh well with my husband’s aging parents, the four of us under one roof. Has it worked well?  Absolutely!  Has it been easy all the time?  Absolutely not!  Would we do it again… read on.
 
First of all, if you’re considering relocating your aging parents in your home, I recommend that you think seriously about it and plan ahead if you decide to do so. Intergenerational living has its challenges. Most of us Boomers have parents in their 70s, 80s or 90s.  It’s said that these elders are “Traditionalists”; in my opinion, that’s pretty accurate.
 
They’ve lived through some very hard times, and they’re accustomed to putting off gratification.  They know what it is like to weather WWII and the Great Depression. This sounds obvious and simple, but when you are actually living together in close quarters, consider how your Boomer mentality and lifestyle will be challenged by this very different world view.
 
So what does this really mean at ground level?  It means that when you splurge on an expensive dinner out, or tip 20% instead of 10 (!), or buy that fabulous designer suit you’ve been anxiously stalking for the perfect markdown at Nordstrom, there could be some critical fallout. “I’m a grownup,” you may be thinking. “This is nobody’s business but my own!” I can say from personal experience that the first time you find yourself sneaking a recent purchase into the house so mom and dad won’t see it--and yes, you’re over 50!--you may feel pretty silly.
 
Plan for some privacy!  Please repeat after me:  Plan for some privacy so everyone will be happy! My in-laws have a private entrance, kitchen and laundry as part of their living quarters. If they want to watch Shirley Temple movies at maximum volume, or embark on a Cosby rerun marathon all weekend long, that’s cool.  I can go upstairs and turn on “Dancing with the Stars” or “Modern Family,” and all is well--though I have to admit I love to visit them when “The Andy Griffin Show” is on! 
 
Through the years, my in-laws have gone from being very independent to needing much more help and care. I’ve known these wonderful Scandinavians since I was a young girl—I actually met my husband’s family when I was just 13!  It’s hard to see them decline.  Ours has been an incredibly rewarding and sometimes very challenging living arrangement for us all, but most important, it has definitely been a wonderful solution in many ways.
 
“I’ve just won $10,000 dollars”! Last night when we were having dinner upstairs, we got a call from my father-in law, Willard.  “Please come down here right away! I think I just won 10,000 dollars!” There are so many scams out there targeting the elderly. This one was fairly harmless, just a come-on to sell air filters, but it was a terrible disappointment to Will.  I was glad we were near to explain. 
 
Last week, Will got a telephone call just as I was walking by his oor. Since he always answers on speaker phone with the volume turned up to the max, I overheard the conversation. A scary, automated voice info rmed him that he would be wired $50,000 dollars as soon as he sent several hundred dollars to release the account. Once again, I was glad I was there.
 
Physical and emotional support, shared caregiving duties and financial considerations all are good reasons to move in together. My husband and I perform different caregiving roles when they’re needed, but we also have hired in-home care from Home Instead Senior Care to come in twice a week to help my mom-in-law, Beulah, with some of her personal care and home upkeep as well.  And yes, I work for the company.
 
This kind of assistance is a godsend for all us.  It helps my in-laws to continue to be more independent, and it also allows them to retain necessary dignity and control in their lives. For example, my mom-in-law needs help with a shower now, and she gets it from her beloved caregiver, Jean. This saves us all the discomfort of having to assist her with very personal care, and she maintains her dignity.
 
Home Instead Senior Care has launched a public education campaign  that includes resources to help families determine whether merging households is a good idea. If families decide to make the big move, Home Instead provides a helpful guide that covers the emotional, physical and financial aspects of intergenerational living, with great tips to make the arrangement work.  There’s a special calculator to help families compute the cost of living together versus maintaining separate places.  This is really useful if you are in the early stages and trying to decide what living arrangement is best.
 
Helping my in-laws, now more than ever, takes a lot of time and energy. Health crises have been far too frequent in the last year. Missed work, endless doctor appointments, emergency calls in the middle of the night--they can accumulate and cause some real exhaustion and burn-out.
 
Is it harder or easier the way were doing it than having to run to another city or town or location to help our seniors? My view is that I’d rather have them right downstairs where we can be accessible quickly. Especially when it is 10 degrees below zero at 5:30 on a snowy Minnesota winter morning!
 
What about stress on a couple’s relationship? For the most part, my husband and I have grown closer because of our shared goal of making sure his two wonderful parents stay well and safe at home with us. Having separate space helps a lot too. But be prepared for this reality:  There will come a time when the elders’ needs will come first.  For us, we are okay with that for now. It is a trade-off we gladly exchange for the company of two beautiful souls we care about so much. 
 
Have I mentioned what we get out of all this? There aren’t enough words to describe the exhilarating scent of a warm, home-baked apple pie waiting for you when you come in from a stressful day at work--my mom-in-law is a remarkable and generous cook!--or the joy of sitting with the folks on a sunny afternoon reminiscing over a pot of tea. When was the last time someone called you and your husband “The Kids”? Well, I know that feeling, and at my age it ain’t all bad.
 
Ultimately, we give to each other. Time, concern, caring. This goes both ways. And if it is a little uneven in the balance of things right now, well, that’s part of the
privilege of taking care of parents who have raised us, nurtured us, and loved us so well.
 
Would we do it again?  Absolutely!  Without reservation.

Many thanks to Nancy Vest
Community Services Representative
Home Instead Senior Care
Cell. 612-272-9501
Office- 952-929-5695
Fax- 952-929-2032
Home Instead Information

 

Dear Kathy,

 

My parents live in a small town in Colorado.  Mom was diagnosed with Alzheimer's several years ago and dad has cared for her with the love that was so exemplary during their marriage.  We have all had years to adjust as she gradually slipped away, but the situation has recently become more serious.  I live on the east coast and I'm able to visit my parents about every six weeks or so. I have one sister whose husband is in the military.  They're stationed in Germany and they get to Colorado only a couple of times a year.

 

My parents don't socialize anymore because mom doesn't communicate and becomes anxious when she's in a group setting.  Dad gets a little help from neighbors, but they live in a small community and many of the older folks have moved away to be closer to their kids.  I've asked dad to move in with me but he will have none of it.

 

When I was home for the holidays, dad told me that mom has been wandering a lot, and he has trouble sleeping because he worries she will leave the house in the middle of the night and die of exposure.  One night he said that he locked them both in the house and then couldn't sleep because he imagined them trapped in a fire.  It is really taking a toll on him.  He's aged terribly this past year, but I know he would be lost without her.  Can you give me any advice?

 

Becky from Boston

 

Dear Becky,

 

Let me suggest a couple of things.  First, you're right: you should be concerned. Caregivers frequently die earlier than the patients they care for.  Undoubtedly, the constant stress, lack of sleep and the difficulty of the work are contributing factors.  Fortunately, you can help your parents in several ways.  There are many reliable companies nationwide that install in-home security systems specifically to keep people safely inside. These systems usually have keypads that require codes for entry and exit and alarms that will signal attempts to leave the home (and fire detection, by the way).  This may be enough for the short term, and it should give your dad some peace of mind, but eventually he may want to consider additional help. 

 

He could start by getting in-home health care providers for a few hours a week or taking your mom to an adult day care facility a day or two.  These services are available even in small communities.  Caution your father to check for license compliance and references, but I have found these caregivers to be kind, gentle and empathetic and the costs to be extremely reasonable.  He should call his insurance carrier to determine if he has coverage for home health assistance or respite day care. 

 

If there is a local senior center there are likely other services that may be available at low or no cost through the county.  You might also investigate whether any small residential care homes exist in his community.  You may be surprised to find several within a one-mile radius - even in a small town.  Many of them specialize in memory care, offer a homelike setting, a good caregiver-to-patient ratio, and can provide a very loving environment.  Most welcome the family members and encourage them to visit often and stay as long as they wish. 

 

Your parents' dwindling socialization has likely left your father feeling progressively more isolated, which may lead to depression.  Encourage him to reach out to the community, find others in similar situations to share his feelings, and accept some assistance.  Your parents are members of a generation who understand devotion to duty at the expense of the individual.  It will be difficult for you to convince him that your mother's quality of life depends on his continued good health. 

 

Any move, however, will take a good deal of adjustment for both of your parents.  Ask your father if he'd like you to research some options. These facilities are called "group homes," "residential care homes," "adult foster care," "adult family homes," or simply "assisted living communities with memory care."  

 

You might want to search our senior housing directory in your father's zip code or city/state and check "assisted living" for a sampling of what is available within a 40-mile radius of his home.  You can narrow the search to as little as 10 miles if you wish.  Share with him what you discover and ask if he would like to visit a few on your next visit.  I've known several elderly couples whom have found a small care facility close to the family homestead.  In most cases, the patient became acclimated quickly because the caregiver spouse was able to visit daily.  The caregiver, although initially riddled with conflict and guilt, began to sleep more, worry less and became energized by the daily contacts with facility staff and other caregivers.

 

How wonderful it must have been to grow up in a loving home with parents who understood the vow, "in sickness and in health."  You clearly understand the problem, are anxious to be of assistance and hopefully have the patience to work your parents through this difficult transition.  Given what I have experienced in the last year with dementia patients, I would ask you to include your mother in all of these discussions.  I have become firmly convinced that there is "someone in there" (Even though the person with Alzheimer's or dementia appears to be unresponsive) and that we should not exclude them from decisions that involve their future.  But I will leave that topic for a future blog debate.

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