Many outsiders feel that caregiving for an aging parent or a spouse is a duty that is handed to you by way of relationship and that it is your obligation to fulfill it.  That is entirely untrue.  Even in the marriage vows the  ”in sickness and in health” part does not state that you must take on the role of caregiver, only that you will uphold your vow to continue to love, honor and cherish. 

Sometimes we forget that our psychological make-up is just as important as our physical make up.  For instance, I am just 5′2″ and weigh about 100 pounds.  No one would ever expect that I could easily work in profession where heavy lifting is involved.  There are times in the garden (many times) when I need help just planting a new tree!  But they might expect that I could be the caregiver of a family member  because I am a nurse.  This assumption might or might not have been true. 

In some families, the role of caregiving is thrust upon the child who seemingly has no connections to prevent them from providing care: a single person with no children.  I know of one caregiver whose siblings told her that it was time for her to do the caregiving because she had been running free all her life! 

Some questions that you should ask yourself before taking on the role of a caregiver (or continuing it) are:

• Am I a nuturer ? What in my life has shown me that I am?
• What is my primary motivation for accepting the role – family obligation, guilt, love, pressure?
• If I need help, is there help available close by and will I ask for it?
• Do I know my limits?  Is there money available for outside help to be called in if necessary?
• Are you able to set boundaries and keep them?
• Do I have my family to care for and how would they handle another person in the home?
• Is your home appropriate for the aging parent or relative? 
• If the home is not appropriate, can remodeling be done to make it so?
• Is there any unresolved anger towards the person for whom you will care ?
• Have you ever been sexually or physically abused by the care recipient?
• Are you physically healthy and strong enough ?
• Are there any special skills needed in caring for this person? If so, are they something you could learn?
• Can your care recipient contribute financially and if not, can you and/or your siblings contribute to their care?
• Are there enough support systems in your community to aid in your caregiving?

When considering whether or not to take on the responsibility of caregiving or to continue the role, the most important question to ask yourself  is what is the most loving choice for the care recipient, for you as  the caregiver and for the families involved?   Do not feel guilty about your decision if you choose a different path.  There are other ways to contribute.

I’m With You

Im standing on the bridge
Im waiting in the dark
I thought that you’d be here
by now
Ther’s nothing but the rain
no foot steps on the ground
Im listening but there’s
no sound

Isn’t anyone trying to find me
Won’t somebody come take me home

it’s a damn cold night
Trying to figure out this life
Won’t you take me by the hand
Take me somewhere new
I don’t know who you are but I
Im with you
Im with you

Im looking for a place
Im searching for a face
Is anybody here
I know

Cause nothing’s going right
And everything’s a mess
And no one likes to be
alone

Isn’t anyone trying to find me?
Won’t somebody come take me home?

It’s a damn cold night
Trying to figure out this life
Won’t you take me by the hand
Take me somewhere new?

I don’t know who you are
But I
Im with you
Im with you

Oh

Why is every thing so confusing?
Maybe Im just out of my mind

Yeah yeah yeah…

It’s a damn cold night
Trying to figure out this life
Won’t you take me by the hand
Take me somewhere new
I don’t Know Who You are
But I
Im with you
Im with you
Take me by the hand
Take me somewhere new
I don’t Know Who You are
But I
Im with you
Im with you

Take me by the hand
Take me somewhere new
I don’t Know Who You are
But I
Im with you
Im with you

Avril Lavigne

You may wonder why I would post a You Tube video and then the lyrics to one of Avril Lavigne’s songs, but I encourage you to reread the lyrics and think to yourself  ”Is this not how I feel on many days???”  There were many times when I was just waiting, hoping, praying…..that someone, ANYONE would come rescue me from caregiver hell, even for just a couple of hours.

This song and these lyrics were actually the subject of our lesson at church yesterday and I felt compelled to share part of the lesson with you.  I’m just going to take it in a different direction though and talk about the importance of spirituality in caregiving.

Spirituality means different things to different people.  To some it is simply the belief in a higher power; to some it is faith in the meaning of life and to others it is organized religion. 

Caregiving often causes a  disruption in  faith.  Caregivers can be faced with questions such as “Why me?”, “Why did this happen to my loved-one?”, “What value can my caregiving have?” or “What did I DO to deserve such misery”?  Caregivers can become confused about what to pray for…..and praying for help for themselves can cause guilt over not praying for their care recipient instead.  ( ”Who am I to be asking for help when my poor husband is suffering through this terrible disease?”)

Whether you are religious or not, you may be able to find faith in your existing beliefs about life and God if you become intentional about it.  Studies have shown that spiritual caregivers suffer from less stress and depression than non-spiritual caregivers.  Prayer can be very comforting and can bring a few moments solace and addressing your spiritual needs can help you grow as a person, find acceptance in the situation and find positives in the experience.

If you’re not yet a spiritual person, start by meditating.  Find a quiet spot at a time you won’t be interrupted and just BE.  Concentrate on your breathing and push the thoughts out of your brain. Begin with just 5 minutes and increase as your are able.  (There are many meditation tapes that can guide you and if you have an iPhone, there are some good meditation apps available.)  As you become more proficient, you can ask yourself a question before you begin meditating, for instance “what is the meaning in my role as a caregiver?”

If you are a spiritual person, you may find solace in taking time to pray, meditate or practice spiritual rituals.  You may want to speak to a trusted religious figure to help you to find meaning in your role.

In either case, focus on the positive.  It does no good to dwell on the negatives that can’t be changed. It will only cause more bitterness and anger to enter your heart.  Start a gratitude journal – at first, you might find little to write about but the more you consider (pray over) it, the more you will find to be thankful for.  Be intentional. Pray for growth, acceptance, learning opportunities, peace.  Pray that you are able to help your care recipient enjoy the remainder of their days as best they can.  Concentrate on the happy moments that appear unexpectedly.  Keep in mind how you will feel when they are not there with you.

My father was not a religious man when I was young; it was my mother who always took us to church and who was able to drag my father along on special occasions.  When he came to live with me, I had already begun to attend a church weekly and he began attending with me.  It wasn’t long before HE was the one who couldn’t wait for Sunday and it was probably him who kept me at church when there were times I just wanted to collapse.  On the night he died, our pastor was able to visit him in the hospital just hours before he passed.

Even if you have lost faith, reconnecting with a religious community can end up being a great source of comfort.  There are answers in the teachings of the Lord.  There is also a community of people who may be able to offer comfort, support………and maybe even respite care !  Be intentional in finding that comfort.

I like what Dr. Gerald Trigg wrote in the book “The Fearless Caregiver” by Gary Barg: “All of us who help others do so as wounded healers.  Our task is not easy, but it is needful.  We are at our best when we begin each day with gratitude, offering thanks for yet another day to receive and offer love.  It isn’t always easy; it IS always necessary – if those we care for - are to become better, and not bitter.”

Dr. Trigg……I’m with you.

There has been a lot of talk lately about how brain stimulating exercises can improve and often even stave off dementias that can occur in later years.  I imagine that it is much like what  exercise does for the body.  As we used to say in nursing school, use it or lose it!  Crossward puzzles, card games, internet surfing and jigsaw puzzles are easy ways for the brain to be stimulated.

 I recently met Monica Dennis  in a new group that I became involved with and when I learned that she is president and creative director of a very cool company that makes custom and photo jigsaw puzzles, I asked if she would write an article for our site.  Kindly, she agreed.

By Monica Y. Dennis

Dementia, and more specifically Alzheimer’s Disease, statistics are staggering:

• Alzheimer’s disease is the most common neurodegenerative disease in the U.S. (1)
• An estimated 5.3 million Americans currently have Alzheimer’s Disease. (2)
• Every 70 seconds, someone in the U.S. develops Alzheimer’s disease. (3)
• In 2002, the prevalence of dementia among individuals aged 71 and older was approximately 3.4 million Americans. (4)

Dementia may cause a person’s mood and personality to change. At first, there may be memory loss and trouble thinking clearly. Later, disruptive behavior and other problems may start.

One of the ways to help treat or even stave off dementia is by giving patients a constant sense of the familiar. Surrounding them with cherished objects can help stimulate the brain and slow the progress of the disease. Jigsaw puzzles go a long way toward helping to keep those familiar people, places, things, and activities at the forefront of their minds.

How Do Jigsaw Puzzles Help the Brain?

Jigsaw puzzles engage the brain to retain information on shapes and colors in order to choose pieces that will fit together properly. This hunt for pieces requires your brain to memorize what each piece looks like or should look like and what kinds of pieces you are searching for in order to complete the picture. Doing this repeatedly reinforces short-term memory.

Jigsaw puzzles also promote a true synergy between the left and right brain. The logical left brain looks at parts. It is sequential, rational, analytical and objective. The left brain is stimulated by problem solving. The creative right brain sees the big picture. It wants randomness, is intuitive and subjective, and even likes the unfamiliar. Jigsaw puzzles offer the best of both worlds.

In solving jigsaw puzzles, the brain is being worked in both hemispheres, thus making connections between the sides as well as between brain cells. The connections enhance the ability to learn, understand and remember. Furthermore, each success with the puzzle – placement of the pieces as well as completing the puzzle – encourages the production of dopamine, an important neurotransmitter in the brain that regulates mood and affects people’s concentration and motivation. Dopamine plays a large part in the pleasure/reward pathway (addiction and thrills), memory and motor control.

How Do You Choose Jigsaw Puzzles?

When selecting jigsaw puzzles for seniors, consider the following:

• No children’s activities – if you think the puzzle feels childish, don’t go with it.
• The degree of your loved one’s condition – are large pieces best or will the standard, large-count puzzles do the trick?
• What’s familiar – landmarks and favorite pastimes make great subjects. You can also make your own puzzles featuring family photos or other objects cherished by your loved one.

Working on the jigsaw puzzle with your loved one is a great way to not only boost their mental activity, but to create even more memories you both can enjoy.

Monica Y. Dennis is the President and Creative Director of Village Works Enterprises, LLC, the makers of custom and photo jigsaw puzzles for all memorable occasions. Learn more about making a puzzle of your own at www.vwepuzzles.com.

Sources:

1 – “Alzheimer’s Disease and Parkinson’s Disease”. N Engl J Med. Vol. 348, No. 14, pp. 1356-64.

2 – Alzheimer’s Association. Alzheimer’s Disease Facts and Figures 2009.

3 – Every 70 seconds, someone in the U.S. develops Alzheimer’s disease.

4 – Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study.  Neuroepidemiology. 2007 November; 29(1–2): 125–132.

I wanted to post a sample of her blog here and because I love ballet myself and have recently returned to classroom instruction, I chose the following post.  I know you’ll enjoy it.

Thursday, February 25, 2010

Here’s what happened:

My Mom, who is 86, and somewhat hard of hearing as many elders are,  lives in Canada in a senior apartment complex.  She received a call from a man who stated that her grandson was in jail for drunk driving (he had been at a wedding, had a couple beers and was caught driving the wrong way up a one way street) and needed money to bail him out immediately.  He mumbled the name a couple of times, and my Mom, being the helpful person she is, volunteered my son’s name.  “Yes, Tyler!” said the man.  “We need the money within 15 minutes and then he’ll go before the judge in an hour.”  So my Mom immediately called my sister to come get her and help her wire money to “him”.  She had all the details written down.

Praise the Lord that it just so happened that my sister and I were texting back and forth about some other banking business.  I had texted “You should go out to dinner tonight.”  About 2 minutes later, she texted back “No..no dinner celebration yet…gotta pick up Mom so she can wire $ to Tyler.  I just heard. Om goodness.”  I texted back “whaaat?  I don’t think I know about this.”

Apparently the man who had spoken to my Mom had said not to notify her grandson’s parents as he didn’t want them to know about the incident. 

So that was about the time I became frantic.  I called Tyler….NO ANSWER!  I called his Dad…..NO ANSWER!  NO ANSWER from his sister either.  Meanwhile Mom is on the way with my sister to wire the money.  I finally was able to talk to Tyler’s Dad who said he had spoken to him just a couple hours earlier and he wasn’t at a wedding; he was at school.  I texted my sister “Are you SURE we’re talking about Tyler?”  “Yup”, she responded.

You might wonder why I just didn’t dial my sister’s phone and talk to her.  Well, she was on her cell phone and not supposed to receive calls from the US because it’s about $3.00 a minute.  I texted her again “Ask Mom if she actually talked to Tyler.”  No response.

It was time for a voice to voice phone chat!  I dialed several times before she finally picked up and she told me they were just about to send the money through.  I heard the clerk in the background.  I asked where it was being sent….Montreal, I heard my Mom say.  MONTREAL????  My son lives in California. 

I told my sister to stop, don’t send the money; it sounds like a scam.  So they called the police and sure enough, that’s what it was.

Seconds away from losing $4400.00. 

If you are a caregiver for a family member who is under constant surveillance, this is less likely to happen, but for those of us with elders living elsewhere, it’s a absolute possibility, especially if they are living in a senior apartment complex or a community of “55 plus” residents.  Please advise all of your aging relatives or friends to NEVER send money by wire OR by mail  without first speaking to another family member.  Never follow anyone’s advice who tells them not to “trouble anyone else” with the information.  Tell them that if a family member is unavailable, to call their minister, rabbi or even their family physician for advice before acting on requests for money, no matter how urgent the matter might seem. 

Incidentally, Tyler was very glad to hear that he was NOT under arrest, as was his girlfriend, sister and father.

It is often common to encounter a care recipient who doesn’t quite understand that you might like some time to yourself (okay, let’s face it; they are usually totally oblivious to that), and when the discussion of respite care comes up, the care recipient responds with some of the following objections: “No, I don’t want some stranger in MY house.” or “I don’t NEED a babysitter; I’ll be fine by myself.” or “I’ll just go with you and sit in the car.” or as my father offered “Now I’m going to have to supervise him while he uses my tools and he might get hurt!”  

This is where creative thinking comes into play.  Many agencies, such as Comfort Keepers and Senior Helpers understand this phenomena and offer caregivers who can provide light housekeeping, cooking or transportation.  

The first few times I left my father while I did errands, I left him with a “senior companion” – this is a person, usually a senior citizen who volunteers their time to sit with an elderly person and talk, play cards, watch a movie, etc.  Unfortunately, this companion didn’t work for my Dad. He felt insulted that he had to be cared for and irritated that he had “to entertain” the companion.

In another trial, I invited a lady to come over under the auspices that she wanted to learn to play Cribbage. My father loved to play cribbage and could do so until the last couple of weeks of his life.  This worked well at first but he soon figured out that when she came over, I left the house and he began to resent her visits and started calling her “the babysitter”.

So I decided to hire a “housekeeper”. Fortunately I had had one in the past when I was busy with my kids in school so it was not completely out of the ordinary.  This “housekeeper” swept the floor, put the dishes in the dishwasher, made my Dad a sandwich if he wished and generally just watched to make sure he stayed home and helped him up if he fell.  This way, my Dad could lie down and watch his TV or sit out on the patio and not feel compelled to “entertain” the caregiver.

I recently spoke to another lady (whose husband has Alzheimer’s)  who originally hired her caregiver “to help her in the garden”.  As she went back and forth from the house to the garden, the caregiver spent more and more time chatting with the husband and he became used to her being there.  The caregiver then began to bring her kids by to visit (to the absolute delite of the husband) and now she is an accepted (and paid caregiver) part of the family.  (This person was not hired from an agency, so bringing her children to the house was not against any rules.)

Other sneaky ways that you might get your loved one to accept a respite caregiver are to hire “a handyman”, an “errand-runner”, “a painter”, “a kitchen helper” , even an “exercise therapist”.  Keep in mind that it will probably take about a month for your care recipient to begin to be comfortable around their new respite caregiver and even if/when they do figure it out, the caregiver will have already been welcomed.

We’ve all heard about the benefits of exercise when you have diabetes. But, how much is enough, and what type is best?  These are frequent questions from patients who are trying to manage their blood sugar. 

The American Diabetes Association (ADA) recommends daily exercise. This can be difficult for many people to work into their schedule!  But it’s important because increased movement helps burn more glucose, reduces the amount of insulin or oral medication needed, maintains a healthy weight, lowers blood pressure, builds stronger bones and helps to manage stress.

.

Two types of exercise are recommended when developing a fitness program.  Aerobic exercise helps improve heart health and insulin sensitivity. Resistance training (weights) improves insulin sensitivity to about the same extent as aerobic exercise, but has added  benefits of increasing muscle mass, strengthening bones and increasing your body’s rate of metabolism. All of these things tend to decline with age, so resistance training is especially important in middle-aged and older adults (with or without diabetes).

Here are the ADA recommendations for exercise:

• Physical activity should consist of 150 minutes or more of moderate-intensity aerobic exercise (50-70% of maximum heart rate) and/or 90 minutes per week of vigorous aerobic activity (>70% of maximum heart rate).  This should be done no less than 3 days per week and no more than 2 consecutive days should pass without exercising. Calculate your target heart rate by subtracting your age from 220 and multiplying by the percentages above.
• Exercise more than 4 hours per week to achieve greater cardiovascular risk reduction
• Exercise more than 7 hours per week to achieve long-term maintenance of major weight loss (> 30 lbs)
• Resistance training 3 times a week unless your doctor says no. These exercises should target all major muscle groups.  Supervision by a qualified exercise professional is recommended when you start to make sure exercises are being done correctly and to reduce the risk of injury.

Exercise does not mean you have to go to a gym.  Exercise means “move more. Looking for some motivation? Here are 5 easy ways to get your exercise routine going:

• Many activities can be counted as exercise.  Housework, gardening, walking the dog, yard work, swimming and biking can all count as aerobic exercise.  Just make sure that whatever you choose gets your heart rate up and causes you to break a light sweat.
• Invest in some inexpensive elastic bands or hand weights to use for resistance training at home.
• Find a buddy to work out with…you’re less likely to skip your workout if someone is waiting for you to show up.
• Set small goals…success will keep you motivated and those small victories will add up to big rewards!
• Reward yourself for reaching your goals.

Choose activities you enjoy and try to vary your routine so you don’t get bored.

People living with diabetes should consult their physician prior to starting an exercise program to rule out any contraindications to increased physical activity. Conditions such as neuropathy or diabetes-related eye problems may make some types of exercise unwise.

Anna Garrett is a Doctor of Pharmacy who has extensive experience coaching and counseling people who are living with diabetes. She is also the president and founder of the National Association of Women in Health Care (www.nawhc.com).

When my sisters and I were diagnosed (one at a time) with cysteinurea, there were 3 lithotripsy machines in our county alone that could obliterate the stones using ultrasound without the need for invasive surgery. In Canada there were 2 in the entire COUNTRY. If we had lived in Canada at the time we would never have been able to afford to fly to the city to have the procedure performed, let alone suffer the wait-time. On the plus side, our medications would have been less expensive IF we could get it (it was a new release).

My father had congestive heart failure along with his dementia. In 1992, he had a quadruple by-pass. In 2001, a device which is a combination atrial and ventricular pacemaker plus a defibrillator was implanted into his chest, thus essentially defibrillating his heart automatically each time it went into “v-tach”….
Would my father have been able to get this technology in Canada in 2001? I’m not sure; I doubt it. I DO know, however; that he would NOT have received a new one in 2007, as he did here (WITH a diagnosis of moderate dementia). The doctor in Canada would never even have discussed that possibility…”no, sorry, there’s nothing we can do”. (At this point, I’m going to side with the Canadian system. WHY ?? Thousands of dollars of Medi-Care money were used for that procedure.)
Please understand that I am not faulting the Canadian health system. But I believe there is a lack of understanding in this country about what a national health care plan will actually entail.
For our elders, their lives will be cut shorter due to the denial of technology based services, death clause or no death clause. Families will be forced to provide much of the care for their aging parents or loved ones because hospitals will be forced to discharge patients much sooner than they do even now. And there will NOT be the support systems in place to make this work out well.
As a country, we need to decide: do we want good BASIC care for all, with families pitching in to help more, or do we want the technology to “save lives” ?
PS Scooters will not be covered by Medicare.

But I believe there is another “big talk” that happens after a parent moves into your home or you move into their home to help them.  I think this one may be even MORE difficult………at least, it was for me.  This talk has to do with establishing OUR boundaries.

When my father came to live with me, he moved 1300 miles away from his former home (which I had also done just 3 months previously) so of course, he didn’t know anyone.  It was understandable that I would take him to church with me, to lunches, on drives to explore the area and to run small errands.  I didn’t realize though that he wanted to go EVERYWHERE with me.  I quickly learned that he became insulted if I didn’t bring home along to the grocery store with me or even to go shopping for linens!  It became almost (no, completely) impossible to go to dinner with my friends because he would then be left behind and would pout. 

When he first came to live with me, his dementia had not progressed so far as to make him unsafe at home alone for an extended period of time but still at that time, he was not walking well with his cane and refused to use a walker.  He fell a LOT. He was also beginning to have some incontinence problems which made having a bathroom available VERY important. 

Because of these conditions, just taking him along to the grocery store was not simply a slight inconvenience.  It could take up to 2 hours to get out of the store because of how slow he walked and because it usually became necessary to hunt for a restroom at some point during the trip. I recall this experience when my children were potty training.  BUT……..I couldn’t go into the restroom with him to help him, so I would stand outside hoping he was okay.  I cannot tell you how frustrating these trips became (although, you may already know from your own experiences).

I remember a time when I had taken him with me to Costco (because he wanted some WWII DVDs that he heard were available there) and almost collapsing into a tearful heap in the middle of the store.  There were only 2 motorized chairs available at Costco and both were in use.  This meant that we had to use the wheelchair – with me pushing it, because of the neuropathy in his hands.  Trying to push a wheelchair and a Costco cart at the same time is almost impossible and as more items were added, it became worse and worse.  I finally just couldn’t do it and left without many items that I needed.

That’s when we had to have THE TALK.  I told him that there were things that I needed to do and that I just couldn’t afford to take that much time to do them. He said that he understood but  emotionally, he didn’t.  The dementia only added to his anxiety and loneliness.

My wanting to go out alone was an insult to his independence, so I signed him up for the “senior companion program”,  a program which is available in many areas that matches up a home-bound senior with a companion volunteer.  My father wasn’t so happy about this either but it did give him diversion enough to where I could run out and quickly do errands.

Eventually, it was necessary to have a caregiver with my Dad whenever I left the house (once a week for 4 hours).  He not-so-affectionately called her “the babysitter”. 

There was an experience, when my grown children were visiting from California, that I’ll always regret.  We planned to go down-town for the parade that night (all of us) but before that, the kids wanted to visit Cabella’s, a huge hunting/fishing/guy kinda store.  We left my Dad with “the babysitter” and had planned to return to pick him up before the parade.  But the weather turned bad – there was sleet, fog and snow and I knew there was no way to keep him from falling (because he still refused to use the walker) so we didn’t go back to get him.  He was VERY VERY upset when we returned.  In his mind, he was perfectly capable of navigating that event in bad weather conditions and he was very hurt that we had not included him.

My mistake with my father was in not having THIS talk soon enough.  When he came to live with me, I wasn’t aware of how frail his condition had become.  He didn’t come to live with me because he thought he needed help; he came to escape a bad situation where he had been previously living.  Perhaps many of the hurt feelings and frustrations could have been eliminated if we had set boundaries from the very beginning.

Before your parent ever comes to live with you or before you move into their home, have a talk about boundaries.  Convey to them that you are also a grown-up and need to have some time alone to spend with your friends and family and that you intend to do that.  Tell them that if the errands can be done quickly, then there will be more time for playing board games or taking long drives in the country. 

Don’t be like me who, now that my caregiving has come to an end, has essentially no social network and must begin again to make new friends.