Friends and Caregivers Archives 2015

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  • Is Disability the End of Dignity by Pat Gates
  • Beneath His Willow Tree (poem)
  • Various emails and responses from caregivers
  • Lack of Sibling Support With Caregiving
  • A note to 75 year old caregiver

 

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FROM THE MAIL:

Received July 15: "That life as you knew it is over. Just over. That you will never ever have one single solitary second alone in your home again. Ever. That you and your husband will never make love in your own home without having to consider the old woman that can hear everything. Never. Ever. That your social life, and any other outside-the-home-life you once had, is over. That you will seldom have the opportunity to take an uninterrupted shower or bathroom break for the forseeable future.  That this is the SHORT list of horrors. That you might wake up every day wishing you hadn't, and go to sleep every night, hoping you won't wake up.That you should NEVER EVER do this to anyone else." 

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Received June 24: "To all aging and elderly people out there: manage to stay fit. Do whatever you can to live independently. Being cared for is a nightmare, giving care is another nightmare. Don´t burden the people you love. Life is meant to last as long as you can take care of yourself. Refuse to be taken care of. Independently: This is the only way to live and die with dignity."

 


 

The following article is in response to the two emails above. 

 

Is Disability the End of Dignity?

by Pat Gates 

Daniel, an example of dignity:
 
Having graduated with a bachelor's degree in art history, Daniel was ready to begin a new life. Not only was there a new career which lay before him but also the prospect of marriage and traveling overseas, which he so dearly loved.  Life was good. However, his life was going to drastically change; his heart was giving out.
 
Daniel had been born with severe heart disease. He always worked to be independent and not to use his heart as an excuse to give up. He loved life and strived daily to overcome pain and weakness. Daniel worked with diligence and with a smile - thankful to live a near normal life as he traveled worldwide, making friends in several countries. I personally have never known anyone who grabbed on to life as tenaciously as he did and lived it to the fullest.
 
In his college years Daniel's heart began failing. He continued to push onward, always making plans for the future, always being upbeat about life, even as he felt the struggle going on inside his chest as his heart worked hard to keep up with the amazing spirit that was driving it onward. However, in 2003, the doctors discovered a serious complication that could end his life if he didn't have surgery; a surgery which would include removing a portion of his heart. Surgery took place and while Daniel survived, it ended the life he so diligently worked for. He would never be able to have a career in art, which he loved. His engagement would end and his love of traveling would be limited to a few trips within driving distance. While there would be episodes of independence, his life became more and more dependent on care from family and friends. This man who had striven to be independent his entire life now had to depend on his parent's care, and the last months of his life,  being hospitalized, sometimes needing help with the most basic functions of living.
 
This honorable man, who was my son, was not always treated with dignity; in fact, there were times when it was quite the opposite. However, he lived a life of dignity and as his flesh became weaker, his spirit grew and his dignified manner shown in patience and godliness. It didn't matter what wretched treatment he received from others, Daniel knew his Savior loved him and that is where his focus remained. He knew true dignity was not a matter of whether or not he could make it to the bathroom without help, nor was it measured by how he was viewed and judged by unreasonable people; he knew dignity lay within his spirit, imitating Christ in his thoughts and actions. Daniel was real and no one, no matter how undignified they acted, could take his dignity away.

In looking at Daniel's life, was he selfish and unreasonable to continue with his life after he became partially disabled from the surgery and, at times, bedridden? Should he have ended his life then? Would that have been the dignified thing to do?
 
The reality of life: 
 
  • Unless someone dies instantaneously all of us will need continual care at some point in our lives.
  • Most people want to be independent and not be a burden but dependence is the stark reality for many of us.
  • Caregiving is a difficult work, emotionally and physically, even when we are very close to the one being cared for.
  • Having someone care for us is very difficult whether it be a stranger or a loved one.
  • Whether or not the care receiver is nice and easy to get along with is beside the point - the person needs care.
  • Whether or not the caregiver is nice and easy to get along with is beside the point - the person needs to have someone care for him/her.
  • Overall, life is not easy. It takes work and selflessness and if we act in a dignified manner, caregiving and care-receiving can be a peaceful, fulfilling work that can bring joy to all.
 
Dignity in life and death (dignity also includes the caregiver):
 
  • Dignity is thinking and acting in a way pleasing to God regardless of the circumstance we find ourselves in.
  • Dignity is not determined by health, wealth, or being independent.
  • Living in a dignified manner will produce a desire to take care of ones' body, however, when illness strikes, dignity will learn to accept help.
  • A dignified caregiver will care for others having compassion without complaint, even when they have to give up their normal routines.
  • Dignity tries its best to be well-mannered, patient, and appreciative for the care received.
  • Dignity always tries to please God in thoughts and actions even if we aren't treated with respect.
  • Dignity in death does not mean dying painlessly in nice clean sheets without burdening anyone. A dignified person may die a messy death with terrible pain, losing body function, and may not be in his right mind. However, his dying in the Lord and his dignified spirit is ready to soar to its God as he longs for rest.
 
God defines a dignified life and death - it is not left up to man to do so:
 
A dignified life and death is not determined by our government, nor is it determined by society. Hospice does not define a dignified death. Families, friends, caregivers and the infirmed can not define dignity.
 
Dignity is defined by our God and Father as told to us by the Holy Spirit in His Word:
 
1. Dignity is to have compassion. If we don't have it, then we need to learn it and grow in it.
  • Finally, all of you be of one mind, having compassion for one another; love as brothers, be tenderhearted, be courteous. 1Pe_3:8
  • For you had compassion on me in my chains, and joyfully accepted the plundering of your goods, knowing that you have a better and an enduring possession for yourselves in heaven. Heb_10:34
  • And when Jesus went out He saw a great multitude; and He was moved with compassion for them, and healed their sick. (Mat 14:14)

 

2. Dignity is to love and provide for the needy. Again, if we aren't loving we need to learn to be so with a sincere heart.

 

  • But whoever has this world's goods, and sees his brother in need, and shuts up his heart from him, how does the love of God abide in him? My little children, let us not love in word or in tongue, but in deed and in truth. (1Jn 3:17-18)
  • What does it profit, my brethren, if someone says he has faith but does not have works? Can faith save him? If a brother or sister is naked and destitute of daily food, and one of you says to them, "Depart in peace, be warmed and filled," but you do not give them the things which are needed for the body, what does it profit? Thus also faith by itself, if it does not have works, is dead. (Jas 2:14-17)


3. Dignity cares for parents.

  • Honor widows who are really widows. But if any widow has children or grandchildren, let them first learn to show piety at home and to repay their parents; for this is good and acceptable before God. (1Ti 5:3-4)
  • But if anyone does not provide for his own, and especially for those of his household, he has denied the faith and is worse than an unbeliever. (1Ti 5:8)
  • If any believing man or woman has widows, let them relieve them, and do not let the church be burdened, that it may relieve those who are really widows. (1Ti 5:16)
  • He answered and said to them, "Why do you also transgress the commandment of God because of your tradition? For God commanded, saying, 'HONOR YOUR FATHER AND YOUR MOTHER'; and, 'HE WHO CURSES FATHER OR MOTHER, LET HIM BE PUT TO DEATH.' But you say, 'Whoever says to his father or mother, "Whatever profit you might have received from me is a gift to God"--then he need not honor his father or mother.' Thus you have made the commandment of God of no effect by your tradition. (Mat 15:3-6)
  • "HONOR YOUR FATHER AND MOTHER," which is the first commandment with promise: (Eph 6:2)
  • He who mistreats his father and chases away his mother Is a son who causes shame and brings reproach. (Pro 19:26)
  • Listen to your father who begot you, And do not despise your mother when she is old. (Pro 23:22)
  • When Jesus therefore saw His mother, and the disciple whom He loved standing by, He said to His mother, "Woman, behold your son!" Then He said to the disciple, "Behold your mother!" And from that hour that disciple took her to his own home. (Joh 19:26-27) 
4. Dignity cares for others
  • Honor widows who are really widows. 1 Tim. 5:3
  • Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble, and to keep oneself unspotted from the world. (Jas 1:27)
5. Dignity treats others with respect even if they aren't acting in a dignified manner - whether we are the caregiver or care-receiver. 
  • 1Co_4:12 And we labor, working with our own hands. Being reviled, we bless; being persecuted, we endure;
  • 1Pe 2:19-24  For this is commendable, if because of conscience toward God one endures grief, suffering wrongfully. For what credit is it if, when you are beaten for your faults, you take it patiently? But when you do good and suffer, if you take it patiently, this is commendable before God. For to this you were called, because Christ also suffered for us, leaving us an example, that you should follow His steps:  "WHO COMMITTED NO SIN, NOR WAS DECEIT FOUND IN HIS MOUTH"; who, when He was reviled, did not revile in return; when He suffered, He did not threaten, but committed Himself to Him who judges righteously;  who Himself bore our sins in His own body on the tree, that we, having died to sins, might live for righteousness—by whose stripes you were healed. 
Our dignified Lord:
 
Dignity is living honorably and respectfully as we have example in our Lord Jesus Christ. No person, nor the circumstances in life, can take away our dignity as it is contained in our spirit, hidden away from the chaos of this world. The only way our dignity is affected by outside forces is if we allow it to be. Our dignity is under our control, persevering by focusing on what it means to be Christ-like in life and death.
 
The Lord is the manifestation of dignity. While His torn, bleeding body was being tortured on the cross, while being racked with pain, while being verbally abused, He had the most dignified death that has ever existed. No clean sheets. No morphine. No loved one holding His hand as His spirit was about to leave this earth. No kind words spoken except from one man who desired to be with Him after death. No demands from Jesus that His tormentors treat Him with respect. No anger or lashing out at those who didn't understand who He was. No cursing out His tormentors.

He was oppressed and He was afflicted, Yet He opened not His mouth; He was led as a lamb to the slaughter, And as a sheep before its shearers is silent, So He opened not His mouth. (Isa 53:7)

A death sentence full of lies, hatred and disrespect. A death filled with blood and torment. A death full of unselfishness and love. Dignity in full bloom.
 
Now tell me what is a dignified life and death? Is it living independently and having a painless, clean death or is the true definition of dignity a heart full of the goodness and humbleness to God's will as we see in Jesus Christ?
 
Conclusion:
Let's determine that we will grow in grace, love and compassion. As the Lord cares for us, let's learn to care for one another in love. As our parents took care of us, let us be ready to care for them whether they did a good job at parenting or not.
 
Let's determine to accept help graciously, no matter if we are receiving the respect from others we want or not. God sees, God knows.
 
Let us all look to Jesus and learn what it means to live a dignified life and death. Let us open our hearts in kindness to one another.

Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls. (Heb 12:1-3)

Therefore strengthen the hands which hang down, and the feeble knees, and make straight paths for your feet, so that what is lame may not be dislocated, but rather be healed. Pursue peace with all people, and holiness, without which no one will see the Lord: looking carefully lest anyone fall short of the grace of God; lest any root of bitterness springing up cause trouble, and by this many become defiled; (Heb 12:12-15)

Thank you, heavenly Father, for giving us direction to love and be concerned for others so that no one has to go through their trials alone.

 

Response from  Ruth Miller: Yes, being a caregiver to an elderly person (in my case two elderly people for 27 years) is a nightmare at times.  I prayed a lot when I was a caregiver and our social life was nil and our intimate times was also affected.  It takes a real toll on everyone and now that we are just recently free of this, my husband has bad knees and we find that traveling as we always wanted to do is not much of a possibility now.  Yes, we gave the best years of our life to two elderly ladies from 1983 until August of this year.  But, I would do the same thing over again if the situation presented itself; elderly people need help and love and I hope that I have set an example for my children and grandchildren in caring for others.  It was not easy by any stretch of the imagination but it was the Godly thing to do.  Here is where the "laying up treasures in heaven" comes in life, and while I may want to throw myself a pity party, I then think of what heaven will hold for me and not having been able to travel as we planned is no longer a big deal.  Just one outlook on care giving and the tolls it can bring on any family when taking care of some one for so many years in your home.

 

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Beneath His Willow Tree

So tell me, does God understand, and can He really see,
A weary widow on this benchbeneath His willow tree?
There were parents busy with, their children running free,
But no one noticed I sat herebeneath His willow tree.
 
Of all the people in the park, I thought of only me.
Could no one know my broken heart beneath His willow tree?
My husband's recent passing adds one more bad memory,
To all my pile of heartaches here beneath His willow tree.
 
"Please take away my loneliness," I prayed, "May sorrow flee" -
But felt my tear start rolling down, beneath His willow tree.
I prayed for one small miracle, just one drop from His sea -
Then found a peace not felt before, beneath His willow tree.
 
As Jesus kissed my tear away, I noticed lovingly,
Another weary woman rest, beneath His willow tree.
And then she shared her loneliness. A new friend she would be.
We talked and laughed and opened up beneath His willow tree.
 
The sun came out and brightened us, as we sipped green iced tea -
And reminisced together here beneath His willow tree.
So tell me, does God understand, and can He really see,
A weary widow on this bench beneath His willow tree?
 
by Louis Gander 

 

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FROM THE MAIL

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"Married 30 years to an abusive man.  Sometimes physically but more verbally.  He is sick.  Slowly getting paralyzed.  I feed him, bathe him, dress him, bring him to the bathroom - you name it, I do it.  And he is still verbally abusive.  Here's the catch.  He never went to the doctor.  Never.  If I walked out he would die within a week.  Any suggestions?" -unknown

 Dear Reader,

I appreciate you writing and sharing your painful situation with us. Caregiving under normal circumstances is difficult at times, but in your situation it is very stressful, I'm sure.

I don't have much information on you and your husband, especially the fact if you are Christians.  However, when I began Our Hope I decided I would respond to all requests for help at face value and do my best with what information I have.

My heart goes out to you and your husband. How much easier it would be for you as well as him to seek help with kindness!

Before I begin to respond with suggestions, first and foremost, if you aren't a Christian that is the best help for any trial we have in life and I beg you to learn about Jesus in the gospels and read about the early church in Acts. Find out what the Spirit reveals in the New Testament on how to obtain salvation in Christ.  You can look at the "Our Hope in Christ" page to help guide you to verses where God has told us how to be saved. Please contact me for help, if you would like to.

I'm going to respond to you as I would if are a Christian. God wants us to go to Him in our struggles and He is willing to help us. 

Pray. Pray daily and throughout the day; express all your pain to your heavenly Father. Pray for wisdom, strength, and help. Pray for your husband to gain the right attitude in not only caring for himself, but in learning how to be appreciative and kind to you. Pray for help from others and help from God's people.

Read God's word for wisdom and strength.

Get physical help for your husband. I realize this may be easier said then done but from my own experience there will come a point where you can't go on. In caring for my son years ago I was up day and night with him and I would call my husband for help. He would have to fly from Florida to Philly to do so as I was staying at my son's apartment. Looking back, I should have ask the local Christians for help; I knew my son wouldn't want me to do that, so i didn't. I do believe the ill person should have their rights about when and who they want to see but I've learned the caregiver has rights as well. Without self-care we just can't go on, and if we try to, there will be a breaking point. This happened to me and I regret pushing myself to the limit.

More than likely if you try and get help you will pay for it with more abuse.  That is something you will have to prepare for and plan on how you will react to this. Pray about it. Have someone with you when you tell him you are getting help. Tell him you have no choice - you, physically and mentally, can not do it alone.

Not only in getting physical help, you need time for yourself. When I was caregiving I hated to hear those words because, like most caregivers, my thought was, "Where do I find the time to care for myself?!" But it is true. If possible, find someone to help in order for you to take a break, even if it is just a walk around the block. If your husband is fine without you for a while, don't just use that time to shop or clean, take a few minutes to do something relaxing. Again, I know this is easier said than done. I also know, from personal experience, help isn't always available.

Know that you are doing a good work and I'm proud of you for caring for a man who evidently doesn't appreciate you as he should or he doesn't know how to express his appreciation (or refuses to do so). From what I understand those who abuse physically or verbally have this intense need to be in control of their spouse for whatever reason and being infirmed makes them feel vulnerable and dependent so their abuse may increase. It's difficult being dependent and bedridden. I've been there and it's frustrating to not be in control of one's own body. There may be anger, depression, and self-loathing. Even with non-abusers, the inward negative feelings may explode outward to the caregiver.

If your husband's verbal abuse has increased since becoming ill, please don't take it personal - it is his releasing his frustrations with himself and life in general. I'm not saying it's right to direct one's frustrations on the caregiver, I'm just saying it is normal to be frustrated. It takes a great deal of patience on both sides.

Now, with that said, your husband really needs to have tests run. I realize you want the same thing. It would be good to make sure there isn't a tumor in his brain causing not only the paralysis but his abuse towards you. Not only tumors but a number of neurological diseases can affect the brain and cause anger or feelings of paranoia which can be released on the caregiver. How and where to get help when he refuses to do so, I really don't know the answer. Seek information from your doctor or a local agency of Eldercare or something similar. Seek assistance from family members, friends, and the church to help you find someone in the medical field to talk to your husband and ease whatever fear or loathing he has of seeking answers to his illness. My son, at times, was hesitant to go through some medical procedures until at doctor, nurse, or technician would explain it to him. He would then agree to it as he felt more confident with more information and reassurance.

I hope you will receive the help you need, not only from others, but also from your husband. If you would like to, please keep us updated on his condition and how your life is going. -Pat

Because I lack wisdom in knowing good suggestions to give you, I ask some friends for suggestions. Here are some answers I received:

 


 
The only way for me to possibly answer this question is from the view I understand to be the Bible view.

First of all, verbal abuse by itself is not reason for divorce.

If this woman and her husband are members of a church, she needs to tell him that he has to stop abusing her immediately or she will take his sins to the church.  If the church cannot help him stop the abuse, then she can tell him that she cannot help him sin, so whenever he starts to mistreat her, she has to leave for awhile and give him time to think about his sin.  If the focus can be on healing his spiritual disease, she may be able to get somewhere.

Generally, abusers believe that their spouse is responsible for their happiness, but that is something that no one can do for another person.  If I choose to be miserable and fault-finding, that does not mean that my husband is at fault.  Our attitudes come from our spirits, and if we are spiritually ill, then our attitudes will be wrong and ugly.  If we're seeking to please God, as this woman appears to desire to do, then we have to understand that our thoughts and actions come from inside ourselves and should be focused on giving God the glory He so richly deserves.

Having said that, there are usually two sides to every story:  there is a sinner and an enabler.  She needs to understand that as long as she enables him to be abusive, it will only escalate as his condition worsens.

He sounds like someone who has an unrealistic anxiety about getting medical help, and that should be explored.  He needs to own up to what is driving that anxiety because there may be medical and financial assistance to be obtained with a proper diagnosis.
 
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1) It’s hard because in a marriage, your actions are interdependent and many times one spouse will act the way they are acting because of something the other did or said. For example, the wife nags because the husband doesn’t listen, etc. So many times an abused wife will feel like the husband’s actions are her fault, and if she were just a better wife he wouldn’t act that way. While in some cases that may be true, that is generally not the case. I think it’s very important that the wife, and people who counsel her, see the abuse of the husband as sin, regardless of what causes it. It sounds like she already sees this, but I think it’s important to call abuse what it is: it’s sin.

2) If she acknowledges that it is sin for him to treat her this way, she needs to realize that sin must be confronted. It is not loving to let someone live in sin. I know it’s a tricky situation because as a woman she needs to be submissive to her husband. But at the same time, being submissive involves putting someone else’s needs above your own, and that includes confronting sin. Obviously this needs to be done with respect and gentleness. I would cite Matthew 18:15-17 as the pattern for dealing with this. If she has already been pointing this out to him, she needs people who they both love and trust to further confront him. I think this would also involve encouraging him to seek medical help along with spiritual help.

3) Some friends of mine are dealing with a abusive husband situation right now, and one of the things they advised the daughter to do was to keep a journal and write down the verbal abuse that she received. Not as a way to keep bitterness and resentment, but as proof to herself and to others who are working with them that she is not making this up.

4) If he doesn’t respond to rebuke from her and from others, I would point her to 1 Peter 3. She has to continue demonstrating a gentle and quiet spirit no matter what his attitude is. Actually, I would encourage her to read 1 Peter as a whole. I think it’s good encouragement for someone who is suffering due to no sin of their own, and it teaches how God will give you joy and blessing if you persevere. And definitely she needs to keep praying for him and have others interceding on their behalf as well.

5) If she hasn’t already, I think she should have tons of support in dealing with this. Abuse tends to isolate. She needs constant encouragement and other people involved. I have no idea what her financial situation is, but maybe it would be helpful to get a nurse to come out to her house to assist in care. Or, if she is part of a good church family, maybe they could give her a break now and then and come care for him.
 
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This lady who has written the question has obviously been through much. There are laws in every state about caregiving. I know that, many times, a person can be charged with a crime if they knowingly let someone in their home do without basic care, such as feeding and cleaning them up. So, it puts a burden on those who must help the person, both from a moral and a legal standpoint. 

In this case, what would the implications be if the woman just called an ambulance? Likely, they would take him to a hospital, where he would be evaluated. Unless his death was imminent, he'd likely be transported to some assisted-living facility or nursing home. With insurance, he could stay there up to 100 days. Then, he'd have to go home or start paying. This could cause them to lose their home, if they couldn't pay out of pocket. If they just rent, I don't know if that would be much of an issue. A social worker could help them sort out these issues. 

If she chooses to let him stay at home, it seems she has the upper hand, so to speak. It would seem that it would be hard for him to retaliate physically if she laid down a few ground rules! For example, she could say, "I am no longer going to accept your verbal abuse. Each time you start in on me, I will leave the room. I will wait one hour and come back in. If you begin again, I will leave. I am a human being, worthy of dignity and respect. Furthermore, I am your wife, whom you promised to love til death. I will no longer be treated disrespectfully. If it becomes necessary, I will turn your care over to someone who can overlook your outbursts. I no longer can." 

I realize this woman has suffered years of abuse and does not feel empowered to deal with it. It would be nice to have more information! Can she get out at all? For how long? Does she have anyone to sit with him so she can leave for periods of time? Could she get some support and counseling from places in her community for "battered" spouses? Many of these services are free. Is there a local crisis call center where she could get some emotional support? Are there any members of the church that can support her? 

My initial gut feeling is that she is in way over her head. If she could get him in a facility, even if he had to come home for one day every 100 days, he's then eligible to return to a nursing home. That's a lot of trouble, but it might be necessary.  It seems he needs the care such a facility can offer. This woman can still visit as much as she wishes. She needs to also think about his spiritual needs and getting him ready for eternity. Perhaps handing off his care would be a wake-up call to him. If he becomes physically abusive because of her actions, she needs to bite the bullet, so to speak, and call in law enforcement. Even the infirmed do not have a right to hit people. 

 My advice to her--reach out! Don't fear bringing others into this nightmare to help you back into the light! Don't let him verbally beat you down and paralyze you with fear! Seek help.
 
 
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I'm curious. I presume that he is able to to get around without needing her help at times.  Is he a Christian?  I'm assuming he is not a Christian.   Or if he is, she might need to talk to the elders, and/or the preacher about how to manage it.  This will probably end up with her getting beaten up for doing it, though.  A lot depends on how well he can get around.  If she has to bathe him and dress him, get him to the shower or bathroom (because he is unable to do it himself) I suspect she is going to get seriously, physically hurt sooner or later.   I would suggest that she ask their doctor to recommend some sort of Councillor. Mental health can help her with that, but I suspect he will be furious with her for doing that, too. She needs to find out how to handle his abuse, both physical and verbally.  If he continues this kind of abuse, they will likely need to admit him to a hospital.  He may have a tumor or something pressing on his brain.  That causes all kinds of verbal and physical problems. However, I suspect that he will refuse any kind of physical or mental treatment, if he has never been to a doctor.
 
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I don't have any constructive advice for this poor woman, but I do know from observation over the years that the person who helps the most receives the most criticism, whether it be from parents you are trying to care for or from a spouse. I do think the caregiver should try not to take the verbal abuse personally. It sounds like she needs some help with the caregiving also. No one can be on duty 24 hrs. for very long.
 
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Get in touch with social services. 
 
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I thought of 2 verses that would apply to this situation...
-- “If it is possible, as much as depends on you, live peaceably with all men.” (Romans 12:18)
-- “And just as you want men to do to you, you also do to them likewise.” (Luke 6:31)
 
She needs some help/relief for herself! If she becomes physically ill or incapacitated, then there will be nobody to care for either of them.
 
 
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This is one of the most difficult challenges to face with a simple answer. Don’t think one exists. As you note part of the problem of trying to counsel someone at this level is what is lacking through the printed (email) word. It is like trying to diagnose a heart attack by email. These kinds of issues are better suited to be dealt with talking face to face. Having said that I know this is not possible since she has sent the letter in without name and reference. As you point out there are always two sides and the emphasis can be placed more on one than the other. Considering a request just from an accepted level of believing what they are saying is the whole story it still leave room for doubt. A number of passages come to mind but without talking personally to her (and him) it would be difficult to know how to progress. My first thought is she needs to find someone to talk face to face with so the whole feeling of the story can be understood. When a person sits down to write a plea out there can be a lot of things lost in the process of translation. There can be some answers like enduring suffering as Peter writes in 1 Peter 2:18-3:6 but not sure if that applies to her situation. She made a covenant with God to care for her husband; how does that fit her circumstance? Are there things she can do to take the burden of her husband with another agency? What are the living conditions? Are children involved in possible care? 
 

 

 

 

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"The days are not yours anymore! I haven't ran a sweeper or took care of my house in a year. I'm just so tired and burnt out." -anonymous
 
I sympathize with you. It is true that the days seem to control you, rather than the other way around. I know what it's like to be so tired in mind and body that you feel like you just can't go on. I know that being "burnt out" doesn't have to do with whether or not you love the one you are caring for - caregiving is so difficult at times, the burn-out may come even with the love of your life. I know there is almost no time for yourself and when you do have it, you are so tired that cleaning house is not a priority.
 
I know you are not alone in your struggles. I know caregiving is one of the most difficult works on this earth. I know God is pleased with you and everyone who puts others first. I'm so proud of caregivers. I want you to know what you are feeling is normal.
 
I know you need answers and help. I get more emails from caregivers than anyone else and they are wanting empathy and relief. Because of this, I'm going to change this page to be more helpful for the caregiver and care-receiver.  Hopefully, in the future, you and others will be able to receive the suggestions and encouragement you need. Thank you for writing and, hopefully, good suggestions will come in to help you and other caregivers to better cope with your circumstance. -Pat
 
 

 

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"I was a caregiver for my mother who had stage 4 cancer for over 19 months day and night. My husband and I only saw each other for about an hour in the evening. My mother died this past November and I'd do it all over again for her today. Our parents and others deserve to be taken care of when in need. Tell your loved ones how much you love them because one day they will not be here.

I am blessed to have a Christian husband who understood my needs in taking care of my mother when she needed help."  -unknown

 

Thank you for writing this encouraging note! I appreciate the giving attitude of you and your husband. -Pat

 

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The following email came in a couple of months ago. I appreciate the caregiver who sent this as any who have been a caregiver understands what the writer is saying, even if the circumstances aren't exactly the same. In fact, the email is such a complete profile of what the caregiver goes through, I broke it down into a numbered list. This list will be divided up in the next few issues and each point will be discussed.  
 
As I mentioned in the last issue, please don't read caregiver's emails with a chip on your shoulder and reason they are just nick-picking complainers who are hypocritically caring for a loved one. In most cases the opposite is true. They volunteered to do a good work, out of love, but as with all caregivers, they didn't realize how difficult it would be and how much help they would need. The realization of this and the lack of response creates frustration and discouragement.
 
Now, with that said, I realize there may be some siblings who can't help with the actual care due to distance or illness. While I was a caregiver for my parents in the past I am now living in another state and distance and illness prevents me from being with my mother as much as I would like to. However, even in these circumstances there are things we siblings may be able to do. This will be discussed as we examine the points in the email. 
 
Let's all examine this email in depth, even those of you who are not caregivers, nor have siblings who are. You can help other caregivers by coming to a more complete understanding of their needs. 
 
After reading the email, we will discuss the first few points: 

 

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 Lack of Sibling Support With Caregiving

 

The red lettering and listed numbers are by me (Pat) to show the points we are going to cover in the following issues. The first three points are discussed after the email.
 
EMAIL FROM ANONYMOUS CAREGIVER: 
 
"I wish my husband's family (1) knew how hard it is for us to have moved in to take care of their (2) mother/grandmother and that they would actually (3) show some gratitude. That is not just a lukewarm "thanks" at the end of a conversation.  First knowing that (4)none of you offered to help us move and my husband almost did it all by himself. (5) Knowing neither of us are in great physical health and how hard it is to do things. Like (6) taking her for "some weekends" like (7) I was promised, instead of just one weekend in 5 months and a 4-5 hours on Mother's Day, Easter and her birthday. Like when (8) you find out I have been sick for 15 days, at least calling to see how I am or bringing a meal by so I didn't have to cook. Knowing I worked all through that sickness on my knees cleaning her home, cooking meals, taking care of my husbands work needs, and her daily needs. Or how about just (9)bringing a meal by when I am not sick or doing a load of her laundry.
 
Knowing that (10)you may have a 40 hour a week job, but so does my husband and he comes home to stress every night to help me so I can go rest and that he doesn't get any down time on the weekends either and it literally costing him his health. Maybe thinking we (11) actually want to have a few hours on Valentine's day to have a meal together. Or not forgetting my birthday when you were told a month and a half in advance and making sure you take her for that weekend instead of leaving me cooped up in a back room with a caregiver making my day very uncomfortable (we cannot leave because our rooms have no locks and she gets in and destroys our things). Making sure (12) simple requests are being addressed like putting locks on the rooms we live in so your I don't have to constantly fight with your mom to keep her from getting in and damaging our things or getting hurt. Understanding that there needs to be an additional lock on her back door because she gets up and unlocks it during the night putting us in danger and leaving us unprotected. Plus having to fight with her to keep her when I cannot pick her up if she goes out and falls somewhere or from getting out into the rain or getting out or trying to get out of the gate. Understanding (13) how incredibly insensitive it is for you to post photos of yourselves on social media enjoying your life at parties, get-togethers and on vacation while we are stuck here day in and day out watching our (14) health and mental well-being deteriorate. Knowing that I average about 4 hours of sleep nightly and that I am always tired. Knowing your mother is mentally, physically and emotionally abusive, heckles me while I try to cook and hovers right over me. Knowing that a lot of times I do not get to eat meals until 9 pm if at all and how difficult it is to do simple things like get showers, cut my husbands hair...etc. And when I do say something to you about the situation, stop subtly trying to say (15) we volunteered when we were asked by you. And not offering to have a caregiver on our anniversary and then guilting us by saying it is a holiday, so they will charge time and a half... either do it or don't. You can see bruises on my forearms and wrists, but you cannot see the (16) mental and emotional scars your mom and family has left on both of us.
 
Please anyone reading this who has a family member, especially one who has married into your family taking care of your parent, please treat them well. Make sure they have some weekends off, honor special days for them too... and take care of them. For many, like myself (17) little things do mean a lot.

THE FIRST THREE POINTS WILL BE DISCUSSED HERE:

 
(1) I wish my husband's family how hard it is for us to have moved in to take care of their mother/ grandmother. The reality is simple - if they were ever a fulltime caregiver they would know. If they were never a fulltime caregiver they don't know and never will understand how hard it is. Even siblings who try to be understanding and helpful, don't fully know what it's like to care for a loved one fulltime. On their side, they should listen and observe and learn ways to help. On the caregiver side, communication is needed to convey your needs - not saying communicating will always be successful and if siblings haven't been helping already, your words will probably fall on deaf ears. But, without it, there is no chance for help.
 
Telling family of your needs should be done firmly, but with patience and calmness. Any outburst of anger will only cause a tear that may never be healed. At the time you may not care if healing is ever done, but the outburst of anger will not be helpful to obtaining the help you need now and, later, when you life is calm, you and/or your spouse may again desire relationships with family members even if you don't at the present time. Be calm and wise.

I'm happy to see this email was addressing not only the mother-in-law's children, but also the grandchildren. Parents are not teaching their children that they, too, have God-directed responsibilities to their grandparents. It's not an option, but a command. Of course older grandchildren should want to help out of love for their grandparent who adored them throughout their lives, but if that isn't the case, they need to feel obligated as much as their parents do.

But if any widow has children or grandchildren, let them first learn to show piety at home and to repay their parents; for this is good and acceptable before God. (1Ti 5:4)

 

 

(3) ...and that they would actually show some gratitude. That is not just a lukewarm "thanks" at the end of a conversation. 

I was going to give Paul as an example of one who was thankful so I went to the Bible to find a verse where he thanks his helpers. It was interesting to find, in his letters, he didn't thank others directly but rather he thanked God for them: "We give thanks to the God and Father of our Lord Jesus Christ, praying always for you, since we heard of your faith in Christ Jesus and of your love for all the saints." (Col 1:3-4)

Again, Paul mentions his Philippian brethren sending aid to him but rather then just thanking them he mentions the gift as being an acceptable sacrifice, well pleasing to God: "Nevertheless you have done well that you shared in my distress. Now you Philippians know also that in the beginning of the gospel, when I departed from Macedonia, no church shared with me concerning giving and receiving but you only. For even in Thessalonica you sent aid once and again for my necessities. Not that I seek the gift, but I seek the fruit that abounds to your account. Indeed I have all and abound. I am full, having received from Epaphroditus the things sent from you, a sweet-smelling aroma, an acceptable sacrifice, well pleasing to God." (Php 4:14-18)

At first I was a little disappointed I couldn't find a simple example of Paul thanking those who helped him and others but then it hit me how beautiful his thanksgiving was - to attibute acts of kindness to being godly and thanking God for those who helped him and others is the ultimate gratitude. Paul linked thanksgiving with godliness so it is the ultimate compliment to recognize the good work, to give God credit for it, and to thank others by telling them God is pleased with their sacrifice.

Thanking your sibling who is caring for your parents is the right thing to do. Don't allow apathy or feelings of guilt to prevent this from happening.

Ways to express gratitude:

  • Tell them, as Paul did, that they thanked God for them.
  • Let them know in your speech you are grateful.
  • Send a card of thanks.
  • Buy them a gift.
  • At the very least, send an email or text saying thank you and that you appreciate their care. (Keeping in mind they deserve more.)
  • Show your gratitude by helping them.

 And let the peace of God rule in your hearts, to which also you were called in one body; and be thankful. (Col 3:15)

 

 

 

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A note to the 75 year old caregiver:

No one likes being forced into caregiving, especially when other family members who are as capable, or more so, are not willing to help. However, the very existence of disability means a forced-upon situation as humans are co-existent on each other and, like it or not, the majority of us are going to be caregivers or carereceivers or both (as I was). 

Here is what I learned:

Being resentful, discontent, and angry only increases and makes life miserable for caregiver and carereceiver. It's a waste of time and energy that ruins life. As difficult as caregiving duties can be, it is not the work that creates the most misery, it is the attitude.

No matter if your father was the best man in the world or the worst, it is scary and sad to receive care from someone who is hating it and miserable. One day we will all need a caregiver. Let's place ourselves in their position. It's not your father's fault that no one will care for him - I've seen the best parents go lacking when it comes to receiving care from their children.

Caregiving will not last forever even though it seems like it will. I cared for my father, my mother, and my son in the past and they are now all gone. I wish I had done some things differently for not only their sakes, but mine.

Quit punishing others by resentment - it doesn't work. The ones you are trying to punish with their lack of help really don't care. The only ones resentment affects is you and your dad and you both have enough to deal with.

Think of ways to get a break.

Think of ways to help your dad's last days contain some joy before he leaves for eternity. That can create joy in you as, in reality, that's an important job in this world. 

This isn't written to be harsh - I've been there and no one knows how difficult caregiving is if they've never done it - my sympathy goes out to you. Selfishness from others is quite prevalent in their world - you are not alone in this. Accept it and give yourself a break and get rid of resentment.

Pray, gather encourgement from the Bible, do good, and know this is all temporary. Find contentment in knowing you are doing the will of your heavenly Father. 




http://ourhopeonline.com

November 2017