Mental Health

The Many Faces of Care

As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care.  The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and Emotional Care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way.  He has had periods of depression and is in fact, on an anti-depressant to address that problem.  When he first became depressed, I didn’t catch on right away to what was happening.  I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions.  Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.”  “What am I any good for anyway?  All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help.  Fortunately, it did.  For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day.  He occasionally needs a reminder but most of the time the memories come back with a little prompting.
Spiritual Care
I believe that we are spiritual beings.  I know that, for Lynn and me, we count a lot on God for meetings our needs.  We look to our Lord and Savior to carry us through a crisis and to look out for our needs.  Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care.  When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared.  Therefore, it takes more effort to maintain the spiritual side of life.  Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith.  In addition, he listens on line to the actual sermon presented at our church.  We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
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Loss of Intimacy?

When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife.  In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed.  He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up.  He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless.  It changed him. After that, he was afraid to be alone.  He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him.  He began to rely on me for everything.  He was afraid to try walking with his walker anymore unless I was right there.  He became very depressed and struggled with the realization that he was becoming or had become DISABLED.  It was at that point that our roles changed.  I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations.  By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain.  He has use of only one arm and hand which becomes essentially no use of limbs by night fall.  I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that.  He does not have the strength of movement even when he does move his limbs for effective action.  He cannot even scratch an itch or wipe his eye of sweat.   That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged.  Though we can have no physical relationship, we do have a spiritual and interpersonal relationship.  We are still able to enjoy a television show or good movie together.   We discuss the news.  We share in the joy of parenthood and now grand-parenthood.  We can still send each other special smiles and looks and we still strive to support and encourage one another.  We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds.  For them, the person they loved no longer exists in the presence other than as a responsibility.  They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else.  They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet.  I dread the day that may or may not come when Lynn doesn’t recognize me or where we live.  I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead.  It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do.  However, for now, I’ll feel blessed that he “has all his oars in the water,”   and I send up prayers for my friends who are not as fortunate.

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Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

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