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Tuesday, May 20, 2014

Notes From The Heart of a Caregiver





“Believe, when you are most unhappy, that there is something for you to do in the world. So long as you can sweeten another's pain, life is not in vain.” – Helen Keller

1. Caregivers don't plan on this bend in the road of their lives. No one can possibly know what they are going to do in a given situation until it is upon them. There is no job training to prepare one for the demands of a job that often only seems to be going downhill. With medical conditions and the effects of the drugs to manage those conditions, it may seem that there is always something popping up, adding another specialist to the list of diagnosis codes.
This is a journey that takes both the loved one and the caregiver down one of the most vulnerable, emotional, guilt ridden, physically exhausting roads imaginable.

2. Opening up your home to an aging parent may seem the most practical, cost efficient, loving thing to do. But do not do this in haste or through emotion. Go into it with your eyes wide open and realize that once you make the decision, you are all in for the long haul.
 I very naively assumed the rest of the family, my siblings, would be so grateful that this burden was taken off their minds that they would be making a trodden down path to my door offering empathy and help. I assumed their knowing their mother was well taken care of amidst family and not forced to be placed in an Assisted Living facility would bring all of us closer together. I assumed the amount of money we were saving would be appreciated in leaps and bounds.
Notice I mentioned the word "assumed" several times.

3. You cannot force anyone to become a caregiver or step up to the plate for a commitment. We all have busy lives, and carving out time for additional responsibilities, may not be welcomed with any kind of enthusiasm. Do not assume that just because the time has come, the children will offer their services. Yes, he or she is their parent too, but you cannot assume they will think the way you do, or for that matter, to even feel obligated. Be very prepared for the fact that you, the caregiver, just may be labeled the martyr, who has no right interrupting their lives or making demands based on principal. Their attitude may be on a subconscious level, it may be their way of handling the reality that they are slowly losing their parent. The outcome is that however things become construed, the caregiver may feel shunned and wonder where it all went so wrong.

4. With or without a family support system, the time may come where outside services are necessary. Physical limitations, chronic or terminal health considerations, and safety issues all take their toll on everyone involved and oftentimes it is best to get an opinion from a third party who can observe the family dynamics from the outside looking in.
When I took matters into my own hands and inquired into a support group and requested the help of a Case Manager, we all received wonderful advice about available services. But it also backfired. I opened up our family's business to an "outsider", to which in their minds I had no right to do. So, yes I got the information I needed and the siblings were educated a bit as to the reality of the situation, but in the end we became more estranged than before.

5. Don't bang your head against the wall trying to make someone happy. How people view things in life became ingrained throughout their lifetimes. Some people have trouble gracefully accepting from others without that feeling of something being owed in return. It is very hard to change such an attitude, since it is usually tied in with a fierce sense of pride and independence. Some people see the "cup as half full", others only see the "cup as half empty" and focus on the negative. If someone is unhappy with themselves, that attitude shows, and it has nothing to do with the other person. It has nothing to do with not being grateful. It's just a black cloud that won't rain itself out, it continues to hang low and heavy, blocking out any sunshine trying to poke through. If you as the caregiver are trying to maintain a home full of positive energy and warmth, be that ray of sunshine and just shine on. Continue to do what you've been doing as far as keeping the person safe, clean, fed and medically cared for. If they choose to wallow in their misery, it is their choice, don't get pulled down too.

6. Separate yourself, step outside the situation, or it will destroy you. Love them and supply their needs but consider it a job, and do it well. You cannot try to drag a mule to water for very long without finding yourself on the losing end of the rope.We all know that unless we take care of ourselves, we are of no use in caring for another. If you don't have family support for respite care so you can get away from the situation, even if it's just a few hours at a time, then seek outside services. There are agencies who have people who will come to your home, and just keep your loved one company at minimal cost to you. Check with your County's Area Agency On Aging for information as to what's available in your area for help in the care of your parent. They can also let you know where support groups are held. It is imperative that you have someone to talk to, vent to, to know there are others in your situation.
Be sure to try to get enough sleep, eat properly and exercise. Neglect of these basic needs will catch up to you and you may find yourself falling into your own state of depression or you may develop a chronic illness due to the prolonged stress.

7. You, the child, has now become the parent.
I don't know how many times I have asked myself the following questions:,
 "What am I dealing with?"
 "What is real and what is learned helplessness?"

When this journey began, satisfying my mother's every need was very rewarding. After a lifetime of hard work, worries and stress, she was simply worn out. Taking care of her was a pleasure if it made her life easier and a time of deserved rest. Our mother admitted she enjoyed being taken care of. But as any parent knows, that stage of being totally depended upon eventually ends. And by then the parent is more than ready for this next stage because it it physically and emotionally exhausting.

When a parent moves into their adult child's home, he or she may always feel a guest. You can do everything in your power to make them feel welcome, help them feel productive, and giving them their own space to make it their own. How the parent adapts to his or her new living situation has a lot to do with personality and medical condition.  Two years later we still do not know if our mother's refusal to learn anything new, such as the kitchen appliances, is simply her lack of accepting change or a realistic health concern with developing Dementia. Regardless, the lack of self-sufficiency is a daily drain on whomever is depended upon for meals, laundry, hygiene, medications, errands, doctor appointments, etc.

Over time, this daily frustration resulted in many an episode of an outburst, followed with bouts of guilt and apologies. Just like a parent nagging a child about what is good for them, the caregiver may be at wit's end trying to get through to the parent about what he or she should be doing to improve their mental and physical health. Too much television, too much laying in bed, unwillingness to exercise, refusal to go outdoors in the fresh air, refusal to leave their room and join the rest of the family, refusal to get involved in activities that would be wonderful mental stimulation with people, the list goes on and on. This nagging ends up being just like the type of parenting called "policing" where the child simply tunes out the tone of voice of the parent.

While very aware and empathetic towards the life she must now accept, it is maddening to witness  a person letting life pass her by, holed up in her room with little interest in much of anything. Anti-depressants may or may not work. For some people anti-depressants can make all the difference, but in other cases the side effects outweigh the potential benefits.
Do your research into these medications and consider natural supplements and alternative therapy.

8. Our children were a full time responsibility at one time, needing round the clock care and supervision. The difference between the demands of children and the demands of a elderly parent, is that with children, their learning experiences move them forward towards autonomy and independence. Older parents with failing health are moving backwards. Those who see them every day have no choice but to witness the heartbreaking loss of their losing a little more of themselves, bit by bit, and being fully aware of it. For those dealing with confusion and forms of Dementia, they say the hardest part is the early stages when the patient knows what is happening to them and feeling powerless to stop it. The denial, anger, and depression that follows can be overwhelming. To know one is losing their physical health on top of losing one's mental faculties is gut wrenching. It is very, very difficult for the caregiver to realize that no matter what efforts they make to try to bring a smile back on their loved one's face is often futile and it is time to just leave them alone. Accepting what is, is a monumental hurdle to being able to go on.

9. It is hard enough when a person is forced to deal with the loss of their physical abilities, but when their mental faculties become threatened as well, it can become a sinking hole.
It may feel like that person you knew may be gone. You have to remember that even if your parent cannot communicate or behave the way you are familiar, that person is still in there, and needs all the support possible.
With the stages of Dementia, it is often a grieving process that the family has to go through twice. We have to understand that this person who is our parent is still our mother or father. The person may not be who we remember, but we have to stop trying to force him or her to be that person again. It is different now, a new normal, and we must accept their loss even while they are still living. Then when the day comes when their physical body passes on, we must grieve their loss all over again.

10. Accept what is with each day. As you notice something new in behavior or level of ability, deal with another chip falling away and accept it. As with many things in life, it is what it is, and we have no choice but to accept what we cannot change.

11. The decision to place a loved one in an Assisted Living or Skilled Nursing facility is often the most guilt ridden, tortured decision a person has to make. But if the care of a parent becomes overwhelming, it may be what is best for everyone in the end.
Do your homework before you need a facility. Do not wait until your loved one is in the hospital and then you are scrambling to "find a bed" somewhere. You don't want to just find a place anywhere that has an opening. Yes, availability will fluctuate, but at least you'll already have an idea of what facilities are of the quality care you want and you are aware of the costs involved. Understand the difference between Assisted Living and Skilled Nursing Care. Find out what benefits your parent's insurance has in regards to long term care. Find out what the co-pays will be, and for how long, find out what will be the out-of-pocket expenses. Know ahead of time exactly what the financial status is so you'll know if your parent qualifies for medicaid, program benefits, or if it will be mostly private pay. Make sure someone is designated to be the Financial Power of Attorney and someone is designated to be the Medical Power of Attorney. Privacy laws are very strict and even though you may be immediate family, you'll be in for many a headache unless the paperwork is there, especially if the parent can no longer make important decisions regarding his or her welfare.

12. You may not be able to change a situation, but you can change your attitude towards that situation. When I was first told this little tidbit of advice I was furious. I felt my husband hadn't a clue what we were going through and was pointing a finger at me for being part of the problem. But the more I thought about it, I realized that my relationship with my mother was so intertwined and complicated that my frustrations resulted not in her change of attitude, but in pulling her down even further out of guilt and feeling a burden.



Try to maintain your sense of humor. Sometimes things can get so ridiculous that instead of losing your temper from exasperation, take a moment to breathe and you may end up just laughing.