When the End is near

Providing care for your adult parents during their retirement years can be a demanding job.  And the job continues to become more demanding as your parent gets older and his or her health declines.  You will have to make more and more difficult decisions as the end grows closer and many of them you will make without the consultation your elderly parent if his mental abilities have slipped away due to the effects of ageing.

If the senior citizen you are caring for is dealing with a terminal illness that lingers, those demands will become virtually overwhelming.  When the end is near like this, your need for assistance will become acute.  This is no time to try to be stoic.  Dealing with a dying senior citizen is something that is usually outside of the abilities of caregiver children.  

If you see that time coming, now is the time to make arrangements for additional help.  If funds are in his estate, you can arrange for in-home nursing care.  These outstanding organizations can be with the senior citizen for as many hours as day as you need them to be and provide skilled medical care to minister to the demands of your parent’s terminal disease.

But once your doctor confirms that your parent is terminally ill, waste no time in getting hospice involved.  Hospice has been a lifesaver for many a weary caregiver who is worn out from months or years of caregiving and is incapable of dealing with the extra demands of the patient’s final months of life.

But there is an adjustment you as a caregiver will have to make as the nursing care personnel and hospice begin to surround your parent more and more in preparation for his or her final days.  You have been so intensely involved with every aspect of your parent’s needs.  And you have done a good job of getting them this far.  But now you have to step away and let these skilled professional caregivers provide the comfort and medical care that only they can give.

This may be difficult because your parent will still call for you to be nearby especially during these weeks.  This is a time to bring in the clergy, and to alert your siblings who may have to travel to be beside your mom’s bedside in her final days.  While there will be tears, if they can be with her a little bit before the final moment comes, that is a closure for the family that is tremendously valuable.  And it helps your ageing parent to have her children close to her as she approaches her final transition to another life.

Hospice will help you go through the transition in your own mind and heart to accept that the passing is near.  It will take some emotional courage to begin preparing for the funeral even though your parent is still with you.  But this can also be a bittersweet time of sharing because if your parent accepts what is to come, she can have some say into what she wants to have happen at the funeral and about other final arrangements.

Perhaps the strangest transition that you alone as the primary caregiver will go through will happen in the days just after the passing.  There is always a shock when your loved one dies even if it was very much anticipated.  But you will go through another drastic set of emotions that can only be described as “separation anxiety”.  

When you get that news that your parent has passed, you will suddenly feel the lifting of a burden that may have been on you for months or years.  You no longer have to worry about your parent anymore.  You don’t have to go there, take care of her food or medicine and comfort her anymore.  The lifting of that pressure can be liberating and disorienting for you.  You will feel strange throughout the funeral and the family times as well.  But keep these feelings in your heart as well because they will be sensations that only you and others who have been primary caregivers will ever be able to understand.

The Greatest Loss of Them All

Perhaps the hardest task you will ever be faced with is to help one of your parents cope with the loss of her spouse.  Naturally, this is going to be a traumatic time for the whole family because as much as mom lost her husband and the father of her children, you have lost your daddy and you have grief yourself.  So how do you help your mom and grandma to your kids get through this very difficult transition?

It will be a time when you will need the understanding and support of your spouse and kids as well.  And just as the grief you are coping with, yourself and in your now widowed mother is difficult, you also have to be strong and brave for your children as well. 

This is the purpose of the funeral because, through the good words of the minister, those not as close to the family feel closure that this good life has gone on to his reward.  If your dad was ill and going through a lot of discomforts, there is often a sense of relief that he is no longer suffering.  And if the family is strong in religious faith, that assurance of the afterlife is a source of comfort as well. 

Only you will be able to gauge how much support or comfort your widowed mother needs in the days just after the passing.  It’s important to remember that grief surfaces in strange ways.  Many times, the real deep grief does not surface at the funeral or even in the days just after as family stays around to be close and go through group processing of the loss of a loved one.

It’s when the family goes home and the routine of daily life sets in that you should plan to be very accessible to your parents  That is when the emotions of grief will surface in the quiet and privacy of the home.  It might be advisable in this kind of situation that you live with the grieving parent for a period of a week or two to help with the transition.

Another thing about grief is that it is selfish.  While we put a noble face on it and say we are grieving “for” the lost one, the truth is the grief is really for the one who remains because it is, she who has to learn to go through life’s routines without that spouse.  By being present during mealtime and those little moments of the day, you can “talk through” the different times when your widowed parent remembers that the dearly departed was part of this part of life.

There will be a lot of rebuilding during those first months of being alone.  So you as the caregiver can help that transition by not letting the times of loneliness be so long between visits.  Obviously, your parent will eventually have to learn to get through the rituals of life alone.  But be there for her so that transition is not so jarring.

But even if your parents were stoic at the funeral and only shows a happy face to the grandkids, there will come a time when she has to cry.  Be there for her.  Don’t try to come up with any “comforting words.”  Just being present, maybe doing the dishes or pouring each of you a glass of wine can be the biggest comfort you can provide.

Finally, talk about the dearly departed.  Ministers know the value of talking about the fun, interesting and wonderful things about the dearly departed.  It is a way of reminding ourselves that he didn’t really go away.  The memory of him will be here forever in your hearts.  So take some evenings and sit down with that box of family photos and go through them with the widowed parent and laugh about the different events of your family history when you were just a little squirt and mom and dad were young and good looking kids themselves.

The joy of these times will be tremendously healing for the grieving senior citizen and for you too.  But by going through grief, healing, closure and moving on together, you bond with your parent and lay the groundwork for the important caregiving challenges you and she will face together in the months and years to come.  But you will face them and you will conquer them because you are going to do it together.

The Caregiver’s Emotions

There is a balance between the jobs of a caregiver and the feelings of a caregiver.  If you can detach yourself from the many emotions you feel when you have taken on this hard job, many of the “tasks” are fairly routine.  Whether it’s doing your mom's and dad’s laundry or grocery shopping or paying the bills or filling out the Medicare paperwork, much of the “stuff” of being a caregiver is pretty humdrum.

But just doing the chores of taking care of your ageing parent’s physical needs is not all there is to be a caregiver.  If that was all there was to it, you could hire someone to handle that.  No, the real challenge of being a good caregiver for your elderly parent is the emotional support you give to them as they struggle with a tough part of their life.

This is particularly true if you are helping your mom or dad through the trials of a terminal illness.  Even if they are good at putting up a brave front for the grandkids and the people at church, your mom or dad experienced a gamut of feelings if the end of their lives is directly ahead due to that illness. 

The caregiver’s emotions at helping your parents deal with this dire realization are tremendously complex.  You have your personal emotions that are a preliminary form of grief.  That is why at the funeral of a senior citizen who passed away from a lingering disease, the caregiver doesn’t seem to be grieving as much as others.  The truth is, the caregiver gets most of her grieving out of the way while the senior is still here and they work together to cope with the decline and passing as best they can.  So by the funeral, the caregiver is usually “all grieved out.”

But your emotions about how you feel about your loved one and about this job of taking care of mom or dad in their final months or years will have a direct effect on how you go about the job of taking care of your mom or dad and how you feel about that job as well.  Probably the two emotions most commonly associated with taking care of an elderly person in decline is pity and compassion.

Pity is not really a good summary of the feelings you have about taking care of your elderly parent or parents.  You don’t really “feel sorry for them” the same way you might feel toward a hurt puppy or a baby that cries.  Pity is not an action emotion.  The action emotion that doesn’t just look at the suffering or unhappiness of the parent and say, “that’s a shame” is compassion.  Compassion sees a need in the elderly parent and doesn’t just feel bad about it.  Compassion says, “There’s a need. What can I do about it?”  Compassion is the genuine emotion of a caregiver.

Can you influence whether you will react with pity or compassion to your elderly parent?  Yes, and how you manage your emotions will be a big factor in how successful you are as a caregiver.   There are three key tips you should keep in mind constantly to help you manage not only your emotions but how you react to problems that come up in your caregiving.  They are…

§  Focus on the one you are caring for, not on yourself.  Focusing on yourself breeds self-pity and resentment.  Focusing on them builds bonding and affection for your mom or dad.

§  Focus on the solution to the problem, not its effects.  A good doctor doesn’t cure symptoms, he cures the disease.  Don’t dwell on how bad something is but on what can be done to eliminate the problem entirely.

§  Focus on creating joy and happiness, not grief and sadness.  Look for the good in a day.  Look for joyful moments, times when you and your elderly parent can laugh, enjoy a meal or a good movie and use this time for fellowship and being together.  That is the real joy of being a caregiver and one only you will enjoy in its fullest.

If you use these three “marching orders” of being a caregiver, your emotions will get in line and you will function out of compassion and not pity.  Then your emotions will become powerful aids in your goals to help your elderly parent.

Caring for the Caregiver

The relationship between an elderly person and his or her caregiver is complex and intense sometimes.  But that relationship does not exist in a vacuum.  There are a lot of people affected by what is going on when that caregiver goes to that senior citizen's apartment and give to him or her that one on one attention that is so necessary. 

For one thing, the caregiver’s friends, family and coworkers are affected.  Becoming the primary person responsible for the care and well being of a senior citizen is a peculiar job because it is tremendously demanding and completely unpaid.  Caregivers are for the most part children or close relatives of the senior citizen being cared for and they have jobs, families and a full life outside of the time they put in taking care of their parents or parents.

So when that responsibility falls to you, those around you also have to give a little to help you accomplish that goal.  But for those who are related to a caregiver, there is a demand for you as well.  If mom has to go over to Grandpa’s apartment every night for two or three hours, that means mom isn’t home helping you with your homework, making supper or just being available if her little girl needs someone to talk to.

If dad is gone thirty or forty hours a week taking care of Grandpa, that is time he is not home providing guidance for his kids, fixing the garbage disposal or making those corny but fun jokes the kids groan about but love.  Similarly, friends and the working world of a caregiver are also asked to give up a little or a lot of the mind, the emotions and the time of that caregiver so he or she can go and care for that elderly parent and divert that energy and time in that direction.

For those of us who have a caregiver in our family or part of our social or work circle, in addition to the sacrifices, you can become concerned for your friend or loved one because of the demands of caring for a senior citizen.  It’s a job that is taxing to even the strongest adult and one that takes a lot out of your friend or family member.  Caregiver burn out is a common syndrome and it doesn’t just affect the caregiver.  If your parent, spouse, coworker or friend undergoes a break down from the stress of caring for her mom or dad, that will have an impact on everyone.

So there is a compelling need for all of us associated with a caregiver to learn to care for that caregiver to help her and support her in what she is doing. Some specific things you can do are…

§  Let them know you believe in what they are doing.  Caregivers often feel very alone and guilty that they are not attending to family and other relationships.  By letting her know you are 100% behind what she is doing and that you are doing fine, that guilt is removed which makes her know she can make it.

§  Let her know she is missed. 

§  Pick up the slack.  Each evening if dad and the kids can pick up the house, then mom can get some sleep and know that you are taking care of business at home so she doesn’t have to worry about it.

§  Let mom sleep in.  Maybe even bring her breakfast in bed every so often.

§  Pitch in.  Go over and help grandma out yourself so it’s not all on mom.

§  An unexpected surprise. Every so often do something to surprise and totally delight mom and give her a fun break from her worries of caregiving.  A movie out or a limo ride around town can go a long way for a weary caregiver.

If the spouse, the children and friends and associates of the coworker can keep and eye on her to look out for those signs of burn out, it may be our responsibility to jump in and give her some support before everything falls apart.  By caring for the caregiver, she is better able to give attention to that senior citizen she is caring for.  So in a way we are all becoming part of the effort to give the caregiver’s mom or dad the best care possible.  And that is what community is all about.