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Expanded Care and Final Care

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End of life on earth is the beginning of your next lifeIf you are reading this article you may be facing, or may soon be facing, a very difficult time in your life.  First let me say how very sorry I am that the challenges of extended care and final care are, or will be, a part of your everyday life.  But let me also assure you that you can get through this.  If I can do it, I feel confident you can too.  It means you will need to establish a new norm; but you still have the opportunity to enjoy a tremendous amount joy in the years, months, and/or weeks to come.  No doubt you will face challenges, emotions, and anxiety.  But learning how to deal with them and leaning on your circle of friends, family and professionals helps get you through the hard times.   If you have read my website dedication then you know a little about what my family and I have gone through.  My personal experience in this area began slowly but it took a dramatic change very suddenly.  I hope this article can not only provide some helpful information but also instill a sense of inspiration, strength and hope.

Since this article discusses both longer term expanded care and final end of life care, I will start with expanded care.  My definition of expanded care in this context is a situation when someone becomes ill with a debilitating disease, illness or condition that either results in immediate, extensive personal care or experiences a progressive personal care requirement that is more aggressive in nature than the typical aging process.

It is important to become educated.  Know what to expect, what to look for, and when you need to contact your nurse or doctor.   You doctor should be able to provide  good information regarding your condition.  The internet is packed full of information so you can search on a specific condition or illness to learn more.  If you are interested in gaining a better understanding of how the condition may affect your ability to function at home in particular, you may benefit from speaking with a professional senior care specialist.  Once you have an understanding of the situation, you can plan.  This could mean modifying to your home, buying products that can be used to overcome challenges in your home, and/or buying products that make performing activities of daily living possible.  Something as simple as putting on socks, changing clothes, going to the bathroom, or eating may require someone else’s assistance.  But it does not necessarily mean you can no longer live at home.  This is somewhat dependent upon the capabilities of the person or persons living with you and the outside services available in your area.   If you are focused on aging in place at home for the duration of your life, remember that home health care aide assistance is usually available.  And when the situation progresses, hospice and palliative care (sometimes misspelled as pallative care) is available in most areas.  For terminal conditions, hospice and palliative care has been know to provide care for a year or two.  Three very popular hospice providers are Hospice Compassus, Seasons Hospice and Pallicative Care and  Hospice Pharmacia.

You may feel overwhelmed at first.  The responsibility can be difficult and physically demanding. Be sure to utilize product and service aids.  They are designed to make your life easier and more comfortable.  And many pieces of durable medical equipment are covered by Medicare.  Some home modifications, if required, can be deducted on your income tax return as well.   There are products designed to assist with almost everything.  Look at the home modification and personal assessment tools for some ideas.  You may have unique needs.  Click here to shop CaregiverProducts.com from The Wright Stuff for care giving products, disability aids, elderly care products, in home nursing supplies, bathing, dressing and feeding utensils, home medical supplies and equipment.

Maintaining some exercise, good hygiene and nutrition are vital.  Walk if you can, even with a mobility aid.  It does not matter if this means multiple short walks around the house.  Getting your circulation going is the goal.   If walking is no longer an option, light hand weights make a great way to get some exercise while sitting.  Chair exercise videos provide additional exercise alternatives.   In some cases, you may be able to progress from chair exercises, to balance exercises, and even to yoga, especially if atrophy and general weakness are the main issues.

The once easy process of getting up in the morning and getting dressed can be a very slow process.  Try not to stress over the time it takes as it will only make things worse and generate anxiety and stress.  Depending on how long it takes to accomplish these tasks, you may decide that eating before dressing makes more sense.  And this decision may vary from day to day.  It is fine to change the usual order of events.  Diets and meals may fluctuate as well due to medication, dietary restrictions, or loss of appetite.  If allowed by dietary restrictions, and with consideration to daily nutritional requirements, fix whatever sounds good that day.  And don’t worry if it takes a while to eat.  Your schedule will be very different now and sometimes non-existent.  If you need to take a break before going to the next activity, that is absolutely fine.  You may be worn out from the effort or you may feel emotional.  The focus is the health and well being of everyone involved.

Dressing can be difficult and time consuming.  And there may be days when it is harder than others due to weakness, tiredness, confusion, or emotions.   If you have a particularly bad day, don’t worry about staying in a robe all day.  It just really does not matter and is certainly not worth added stress.  You will find techniques and shortcuts that work for you.  Dress smart with items such as tear away Depends, elastic waist pants, front button shirts, slip on shoes, and front hook bras.  In other words, use clothing and underclothes that are easiest to put on and off and those that can be manipulated from the front.  By the time you are up, dressed and fed it could be midday.  This is one reason you should avoid making a morning appointment.  The few appointments Dad had in the morning, due to no other option, created an incredibly challenging schedule.

Maintaining good hygiene takes a lot of time, like just about every activity now.   In fact, for us it was certainly the most time consuming task.  You are probably getting the underlying message, i.e. everything takes more time!  When getting to the bathroom on time becomes questionable or accidents become more prevalent, use of Depends or other Incontinence Supplies are needed.  It is usual for this transition to be emotionally difficult.  But in order to manage the situation and age in place at home, changes are necessary.  Some decisions are simply made for you to keep that dream of staying at home a reality.  You just do what you have to do.  Thorough cleaning of buttock and genital area is critical.  Otherwise skin issues will absolutely be a problem.  Flushable wipes are great to use.   Many of the Depends, or like products, are designed to be removed by tearing down the side rather than having to pull them down.  This makes changing and cleaning up MUCH easier.  The desire to use the toilet in lieu of reliance on Incontinence Supplies is natural.   But the need to go can exceed your ability to get to the restroom fast enough, especially during the night when you have to get out of bed and may become disoriented.  So we never regretted use of a mobile toilet seat next to Dad’s bed.  It was seldom used at first but was eventually needed on a regular basis.  And if you are strong enough and fast enough to get out of bed but not able to make it all the way to the restroom, it beats using a bed pan any day of the year!

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One aspect of helping my father age in place that took some adjustment on my part was getting over the embarrassment of helping him with personal hygiene.  Dad realized the situation and put my mind at ease. “I saw you naked coming into this world and I guess you are going to see me naked going out”, he told me.  From that moment forward we both just dealt with the situation.  Facing the most difficult challenges together with love and understanding makes aging in place possible.

If using the shower or tub is still an option, it is best to tackle this physically demanding and time consuming activity in the evening when you do not feel rushed.  For a quick wash up earlier in the day, use of waterless shampoo is an option.  And for those with a limited ability to open the mouth or reach a sink to spit, a waterless oral hygiene products are available, i.e. The Freedom Brush by UTRM and the Crisp by Colegate. 

A walk-in-tub is a great choice when getting into and out of a tub is no longer possible or too dangerous even with use of a transfer bench.  If you are able to use the shower or a tub but need assistance, transfers benches and shower seats make it possible.  Select a style that provides the safety and assistance you need.  Being able to soak in a warm bath or have warm water cascade over your body can provide therapeutic benefits. 

When it comes to bed safety, a side rail, such as the Stander 30″ Safety Bed Rail & Padded Pouch – 8051, is also a must.  This product helps you in getting up and down from the mattress and prevents accidental falls from the bed itself.  A unit that can but lowered and raised is a huge plus.  It allows for ease of personal care and provides the protection you need.  Many versions are also easily transported for use in other rooms or when away from the home.   

Maintaining as much normalcy as possible should be one of your goals.  You will have a new norm but getting from the bedroom, to the den, to the kitchen and the bathroom may not sound important but really helps with moral and overall outlook.  No one wants to stay bound to the bed or miss the social interaction with family and friends.  It may take work and effort to move around but the trade is worth it.  Since you have good days and bad days, it is suggested that Walkers & Canes always be readily available.  We kept canes in most rooms of the house, just like I do reading glasses now.  Use of a transport chair (Aluminum Rollator w/7.5″ Casters) for room to room movement is a great product providing both a walker capability and a personal transport option.   It also has the added safety feature of a seat if you suddenly become tired or weak.

If you have a bad day and are unable to get out of bed, with or without a little helping hand, there are a few things you can do.  Try rolling onto your side, place firm pillows down the back, swing legs off the side of the bed while having someone hold the outside upper arm or armpit, and then lift as they get into an upright sitting position.  Have them lean forward slighting and push with their legs while you provide some lift under the arm or armpit.  Have a walker, Rollator, or wheelchair strategically placed, with brakes on, to use as added support once on your feet.  If you have enough arm strength there are also trapeze bars, such as the Offset Trapeze Bar – Octagon Tube, that hang over your bed.  What you should never do is use or allow use of items that are not intended for support.  This leads to falls!  

If there is a fall, you can be injured and it can be extremely difficult to get back up, even with assistance.  How difficult depends on where the fall occurs, i.e. bathrooms can be a challenge, and how strong you are.  Muscles weaken with age and illness.  When Dad still had strength, he was able to get up by rolling onto his side, lifting his torso up with the support of his lower arm and elbow and then rolling to his knees.  Once in this position, he was able draw one leg forward and lean on a surface to stand.  Sturdy, solid furniture usually worked.  But in the middle of the room, we used his transport chair with the brakes on, one person holding the chair and another providing some lift under his armpits, if needed, or just ensuring he did not fall sideways or backwards.  If only one person is available, realize balance is an issue.

When Dad weakened to the point he could no longer provide any assistance, moving him to graduated heights was the answer.  The most important items I used was a low profile footstool.  We had it readily available and it was a lifesaver.  Without the stool, we would have required professional assistance. We went from the stool, to a low chair, to the wheelchair.

If you are not strong enough to help or no one else is available, don’t worry.   You should note that many insurance policies, including Medicare, will pay Hemsi (ambulatory service) to assist you in getting off the floor.  So be smart and be safe.  Don’t hesitate to call for outside assistance.  People were always offering and happy to help.

Enjoying one another’s company in a family room may get increasingly difficult due to mobility, balance and strength issues.  My dad was able to use his favorite recliner for quite some time.  And he loved chatting, watching tv and listening to music with family.  These activities along with reading and surfing the web on your laptop, such as the Asus – VivoBook 11.6″ Touch-Screen Laptop – 4GB Memory – 500GB Hard Drive – Pink laptop or Acer – Iconia Tab 32 Gb Tablet – 10.1″ – Nvidia Tegra 3 1.30 Ghz – Silver larger screen tablet, can be enjoyed from the comfort of your lounge chair.  On a side note, these items make great gifts.  While my father was reluctant to use the new lift chair, (Order a Lift Chair with Confidence! FREE Lift Chair Fabric Swatches), the day came when he could no longer get out of his recliner.  He was literally stuck.  My mother tried to assist him but to no avail.  He sank farther and farther and eventually ended up on the floor.  From that day forward, he was happy to use a lift chair.  My dad regained confidence and more independence as he was once again able to adjust to his limited mobility.  A note of experience,  we found use of bed pads on the seat of the lift chair a really smart idea.  This preserved the chair itself and made cleaning up accidents much easier!  And if getting all the way to the bathroom is a questionable task, keep a urinal handy.  We had one in the bedroom and den.  This saved many accidents!

We found a number of products to assist with mobility, but the fact is, moving around was still difficult.  So after getting out of bed, Dad was often sitting in the den or sitting at the kitchen table.  Making sure he could reach the things he needed was important.  This was especially true to allow Mom the freedom to be in other areas of the house or even in the yard.  When at the kitchen table, everything Dad needed was basically within reach.  But that was not true in the den.  Our solution, and one I highly recommend, was use of a C table.  There are attractive designs that can blend with your décor and it allowed for leg lift movement.  But they are typically not height adjustable.  If you want something that can be used in the den, bedroom or for furniture of various heights, you might prefer the traditional adjustable bed table, such as  the Drive Medical Non-tilt Overbed Table – 13067.

For some, like Dad, dementia creates additional challenge.  Our experience was one where confusion came and went.  Dad did not have Alzheimer’s. But medication and calcium deposits in the brain due to diabetes caused confusion.  It was definitely a day to day or week to week fluctuation.  But one thing was certain, confusion can be dangerous.  Mom found him on the back porch one day with no idea why he went outside.  And getting up in the middle of the night to use the restroom and forgetting where to go occurred on multiple occasions.  But there are ways to improve safety.  Concerns regarding Dad wandering at night was alleviated by use of an interior wireless alarm on the master bedroom door.  After arming the door with a remote, if the door was opened an alarm would sound.  For potential wondering during the day, use of a baby monitor, such as those available at Safe Beginnings, was the perfect solution.  We used a monitor with both vibration and sound mode.  With the dual mode, tasks that create noise, such as mowing the yard, could be accomplished without fear of missing notification of activity in the house.  A friend shared another great idea for finding the restroom at night.  Handrails were installed along the path to the toilet and use of warm glow rope lighting along the floor provided illumination to prevent a fall and to designate the correct path.  Use of 8 foot lighting allows for more flexibility to adjust for paths of various distances.  I wish we had thought of this for Dad!

Once you or your loved one are bed bound, tasks and focus change.  If you request hospice services, they may provide  a bed and air mattress similar to the one we used.   But if you get your own equipment and furniture, I STRONGLY suggest use of an alternating pressure pad.  My dad did not develop any sort of pressure point despite becoming bed bound for the final two weeks.  We were thrilled with this product.

As hard as it is to accept, the day may come to make unthinkable decisions.  It made me sick to think about, but when the day arrives, you realize there is no changing reality.  There is only dealing with it, responding to it, and making the best of it.  Days become numbered very quickly.  End of life care begins.  The moments you treasure become more precious. What seemed meaningless before is now a celebration.  Eating a full serving of food can mean the difference between a good day and a bad.  It can mean your loved one was able to really enjoy one of their favorite foods.  And nearing the end, you might decide to allow consumption of food outside of typical dietary restrictions.  You have to weigh those decisions and discuss them with your doctor.  If you wait too long, appetite will be gone.  If you start too early, it could reduce the number of days you have left.  But each person has to decide what they consider quality of life.  Quantity can just mean lingering the inevitable with more pain.  But making it to a special day could have more importance than enjoying a meal.  It truly is a personal decision.

There are a lot of emotions around holidays and special occasions.  Celebrating them was initially awkward.  Were we supposed to be happy?  But we knew it might be Dad’s last.  Should we buy an expensive gift that may only get used once or twice?  I found the answer to both of these questions were yes.  Absolutely yes.  Be happy.  He needed it.  We needed it.  Give him that gift he loves.  It may be the last earthly excitement at getting that gift he always wanted.  Normalcy, celebration, happiness and love were the focus of our efforts and lives.  It was surrounded by responsibility, exhaustion, and anxiety.  But it was so important that we all enjoy the holidays and special occasions.  And I wanted nothing more than to make my dad feel at ease, loved, and happy.

As all experiences regarding one’s final days on earth vary from person to person, I cannot tell you what to expect.  You may experience sudden death or have to deal with particular symptoms of a disease or condition.  We experienced what is described in literature as the natural dying process.  Dad did have cancer but in the final days his processes slowed and organs began to fail as the body was designed to do.  Unfortunately, I cannot provide words to eliminate the fear of what the death experience will be for you and your loved one.  But knowledge helps minimize the fear.  In a nutshell, there are a couple of behavior changes that are normal when one enters the natural dying process.  You will start to withdraw from the world.  In other words, you may be sitting in a room with no tv, radio, book . . nothing.  And you  may even close your eyes even though you are awake.  You  may not interface with others as often and with less depth.  The appetite really begins to dissipate.  The body no longer requires food so the desire to eat just fades away.  It came to the point where Dad ate only a few bites each day.  And eventually, he really ate nothing at all.  This lasted for 2 -3 weeks.  While you might expect there to be a lowering of the vitals and a slow transition into death, Dad was still trying to get out of bed to use the restroom less than 48 hours before he passed.  It really just varies from person to person.  But in the last two days you could see the process accelerate.  Two things that were upsetting to me but not emphasized in literature I would like to share.  Had I been more prepared, they may not have been as upsetting.  Dad began to gurgle with every breath.  It sounded as if he was drowning in his own fluid.  The nurse told us it was normal and that it does not bother them in the least.  However, it sounds distressing.  Hospice told us there are drops that can put in the mouth to minimize or prevent this.  I highly recommend you request the drops right away to prevent  this symptom from causing additional anxiety.  Secondly, as the muscles weaken, the eyes roll back into your head.  They can still hear.  But you will only see whites of the eyes.  There is nothing you can do about this but just know they can still hear you.  In the days or hours prior to death, the mouth will gape most of the time due to the gradual weakening of muscles.  Do not be afraid to administer the medications prescribed on the allowable schedule.  It will alleviate pain, calm anxiety, and makes the process more peaceful for everyone.  I should add that hospice was absolutely wonderful!  They were so caring and comforting at an extremely difficult time in our lives.  I would advise everyone to utilize their services, or similar service provider, when dealing with a terminal condition.

One thing we realized near the end was Dad needed to know we were going to be okay.  We supported all of his decision because it was his life, his pain, and his death.  Helping someone you love to die is harder than there are words to describe.  But it is the ultimate gift you have to offer for those you love.  Dad passed quickly and peacefully.  There was no struggle; no gasp for a last breath that you might fear.  He just slipped away, at home, surrounded by those who love him.

Some helpful hints:

  • Use cups with lids and straws.  It will dramatically reduce amount of spills.
  • Keep nuts or other healthy snacks out and within reach since eating smaller amounts more often will replace the usual eating of three meals a day.
  • Be flexible!  You may plan on going out to dinner or to a movie just to have plans change minutes before you were going to leave.  You or your loved one may suddenly feel poorly.  Do not make a big deal about these sudden change of plans.  Reassure that going another day is no big deal.  Enjoying the activities takes priority.
  • Get some clothes that are easy to get on and off.  Frequent changes are likely.
  • GET RID of throw rugs that may slip!  They are sure to cause a fall.  This also goes for shoes.  No slippers or slipper socks without non-slip bottoms.
  • Try not to stress if appetites wane during regular meal time.  Eating small amounts more often is fine if there are no medical conditions or doctor’s advice otherwise.
  • Be patient!  It was amazing how long it could take to do everything.  This includes what used to be the simple task of getting into and out of a car.  Get started earlier than you thought necessary.  Plan to leave earlier than usual.  And don’t worry if you are late.  Slow and late will become common terms in your life.
  • Try and stay positive.  Emotions are contagious.  If you stay strong and positive it will wear off on those around you.
  • Get enough sleep!  You will have many interrupted and even sleepless nights.  Try and go to bed early and get someone else to help by staying overnight on occasion so you can get a good nights sleep.  If you aren’t health, you cannot help someone else.  This is true for eating as well!
  • Get away!  Stress can get to you both physically and emotionally.  Get someone to sit while you go do something fun.  If no one is available, there are adult sitting services in many areas.