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A Loved One's Lament Editorial Responses

These are just some of the many responses we received from our Editorial of 01/31/00- A Loved One's Lament

Gary,

I live with and am the primary caregiver for my 90 yr old mother.  I do it all with very little help from the family. VERY LITTLE.  My brother lives 500 miles away and we are lucky if we see him once a year.  My family has said that I have a FREE ride.  This has ripped my heart out.  Will they ever see that I do not have a “free” ride?

 D.H.


I have found it easier to remember my own worth and value as a member of my family, community, stroke support group, etc. by attending for many years a church that emphasizes the Bible passages that say something to the affect that all God's children have value and are worthy of love from God.  God doesn't make junk the kids at church love to say.  Perhaps this woman's husband would allow her to go to church for a women's Bible study each week, especially if the church women give him a helping hand with caregiving chores.  There she would find such support and be able to vent a little.  She would also start seeing what value she has to other people by helping people do what she can do yet and they may not be able to do.  When you help others, you help yourself get over a feeling of worthlessness that causes depression and that some caregivers want you to feel because they feel so overburdened by caregiving.  It really comes from their sense of entitlement to do things the way they were used to doing before, lack of control and selfishness.   Care recipients should be aware that many caregivers suffer from depression just as much as care recipients do, if not more.

Such caregivers can become abusive also in this mode. The care recipient should memorize the telephone number of the Abuse Hotline in her area as well as the police.  She should be encouraged to make those calls, despite they may embarass her caregiver, so the caregiver sees the reaction of others besides his care recipient to his ways and his greater feelings of the need for control or for punishing his care recipient.  Only then will he feel from embarassment a need to change his style.  And only then will the local social services step in to assist.  Social services can't step in if no one reports the abuse or asks for services.  Perhaps fellow church goers can clue this couple in on what kinds of social services are available in their community and how to access them.  You'd be surprised what Medicare will cover in order to keep the care recipient and also the caregivers out of a nursing home where they lose control of their money, must spend down all their assets, and then become dependent on local tax dollars under Medicaid.  A choice no one wants to make.

Reports can be made anonymously by the neighbors, church friends, other family members, etc.  In fact if anyone sees such abuse going on, they should be reporting it.  If not, they are to blame for the care recipient's abuse and possible death in some cases.  If the care recipient is elderly, there are more strict laws and greater penalties for yelling at, starving, neglecting or abusing the elderly.   Most elderly abuse reported is abuse by caregivers, whether family members or hired help.   But really the support group and church help should be joined before things progress that far.  Hopefully the caregiver could also find support and a helping hand at the church to take the pressure off from caregiving.   If not, then the call should go out to social services before things get that much more out of control.  It has been said that caregiving always has at least two victims, the patient and the caregiver and sometimes their other family members too.

Best wishes and many prayers for that care recipient.        Sincerely yours,    ....S.W.


Not all people in need of help from a caregiver are completely incapacitated. It was important for me to remember when caring for my husband that I was not his boss, only his caregiver, friend and wife, and that as such we were partners. When I overstepped my bounds, he let me know it – even, to my chagrin, once telling me that I made it harder for him to get better. That was not an easy thing to hear.

We caregivers think we know what’s best for the people in our care, but sometimes the truth is it sometimes is a disguise for what we think will make a difficult situation easier. But easier for whom?

Caregivers, whether family or professionals, must remember to treat the person in their care with respect, and the person receiving care must ask for that respect and seek care where they need it. Being able to appropriately articulate what you need and why is crucial.

S.B.


I sort of understand where he might be coming from - in caring for my mom I thought if I could just be there all the time and control every bite of food she ate and everything she did or wanted to do I could ensure her safety (she is prone to falling and with osteoporosis, it seems bones break every time).  The stress was incredible as I work full time. Mentally/psychologically I was convinced that if I was there and controlled her environment and activities, nothing bad would happen.  However, I have come to realize that even if I was there 100% of the time she could just as easily fall when I was in another room, or in the bathroom, or asleep.  She has now compromised and is using her walker most of the time (about 98%) and I try to not hover and lecture all the time.

It was just shear selfishness on my part and some misguided sense of what I could prevent simply by my presence.  I now realize that I cannot put her in a bubble to protect her from everything or then she has no life at all and I am constantly stressed.  While I still succumb periodically to guilt for not being with her 100% of the time, she now feels like she has some of her life back and I am on my way to realizing that as much as I would like to think I can prevent the inevitable, I cannot, and when accidents happen or when her time comes (she is 81 and has at various times had 2 bouts with cancer, broken hip, broken arms ...) I will have to deal with events as they occur.

The lady's husband may have the same feelings and think that if he can just shelter her from everything (activities which he thinks are risky such as the gym) she will be "safe". However, as I eventually realized, he cannot.  In addition, while he is "protecting her", she has no life and is succumbing to depression.  I wish the best for both of them.

L.K.


I would find out what payoff the husband is getting by "keeping his wife depressed" (in other words, not helping her, when he could easily do so).

Change is scary -- and difficult. He is used to his wife being depressed, and it is easier to control her (which it also sounds like he is doing) if she is at home, just taking medicine.

The best (proven) treatment for depression is a combination of meds AND talk therapy. And perhaps... like a family member dealing with an alcoholic can find AlAnon useful... he needs some talk therapy to help him relate to a wife that is NOT depressed!

K.L.

 

 

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