When the Roles Reverse

There will come a time when, suddenly, you will realize that you've become the parent. It's a very sad moment for most of us. The person who had been your moral compass, your emotional support, advisor, cheerleader, and YOUR caregiver--now is totally dependent on you. This was one of the saddest days of my life, and yet, I needed to remain strong for my mother who sat next to me, sobbing, with her head on my shoulder. I'll never forget the moment. Our roles had reversed. Her life was no longer in her control--it was now in mine. It would now be my responsibility to make decisions that would impact the remainder of her life.

This transition may come gradually or may be an overnight event. Realize this moment is traumatic for both of you.

It is at this moment that you'll have to be very certain you are emotionally, physically, and financially equipped to handle this new role. Many of you will also be a parent to children who also need and are dependent on you. You will have to balance each role cautiously. And you may also need to be an attentive spouse and partner.

It's important to bring your family into the extended family picture. Grandchildren, no matter what their ages, can be a great comfort to a grandparent. Young ones can help get slippers, adjust a pillow, read them their homework, and older children can help with chores to ease your own burden. They, along with your spouse can also help with meals or laundry. But it's important that you identify what your anticipated needs will be so you can get your family on board with being part of the solution, rather than adding to the problem. And yes, it may not be fair to have to involve your children and spouse in the care of your parent, but, life is rarely fair.

If you are the adult child caring for an opposite sex parent do go back to my previous post on preserving one's dignity. Allow them their privacy even if you are required to dress or bathe them. I assure you that what is difficult for you is ten times more difficult for them.

I grew up with my maternal grandmother living with us. Our house was small and my grandmother's bed was in the den which is where the family television was located. My father felt his space was invaded. You need to be very aware of everyone else's feelings because this will impact on your other relationships. Compromise is the name of the game. Make certain you understand what every one's needs are before you make changes without their knowledge, or input. Don't be a martyr. As a family you are all in this together. And when everyone is included it truly can be a very rewarding experience for all.

But none of this is easy. You may find a need to go to some family counseling sessions in order to make sure everyone fully grasps the meaning of 'compromise'. And that everyone learns how they can best pitch in to help. Decide if you can afford some additional help, whether with the person needing care or with household chores. Spending $60 on a cleaning service is money well spent if you can afford it.

And I will add another important piece of information. My mother was very dedicated to her mother and it was at the expense of my father. Now whether or not my Dad was, or was not, being immature is really irrelevant. My Dad died suddenly of a heart attack and my grandmother lived for many more years. You cannot assume that others in your life will continue to be there when your caregiver obligations are over. This is why you need a family 'game plan'.

Dignity First!

When caring for someone whose abilities have diminished, it is paramount that you never erode their self-confidence. There are very few people on the planet who I think ENJOY needing to depend on another for assistance. It's demeaning, it's humiliating, and the person feels less of a human being.

I think one of the benefits of my writing this topic is that I've been in both roles;both a caregiver as well as the one receiving care. After an accident I was incapacitated, hospitalized for two months, and in a wheelchair for 6 months. I instantly went from someone who was used to doing for others--and how I defined myself--to someone without a purpose any longer.

My 'activities' were limited to reading, eating, and watching television. I've always been a voracious reader but knowing it was one of only three alternatives was very difficult. But my personal tragedy was also a blessing in that I rekindled friendships with a family who I had loved since I was a teen--and I found myself living in their family home and remembering every reason why I fell in love with this family decades ago. I truly don't believe there's a human who wants to hand a urinal to another human being and ask, "Could you dump this for me?" So, you need to be sensitive about things that may be embarrassing to them. It does help if you assure them that it doesn't bother you and even to make a joke about it can lighten the moment.

And also remember, if we live long enough, most of us will need to be cared for at some point in our lives. So do think through, 'what if the roles were reversed?' How would you want to be treated? What would be comforting to you? What would help to make you feel more productive?

If the person needs assistance in dressing, toileting or showering try to keep them as covered as much as possible. Most people are not 'flashers' and prefer to keep their bodies to themselves. Hold an over sized towel in front of them as they get into the shower. Give them a towel to cover the parts you are not washing. Use a blanket to help shield them. Whatever it takes--think DIGNITY first!

Be sure to engage the person in active conversation. Do they like politics? World Affairs? Then make certain they have weekly news magazines. These can be topic stimulate great discussions. Do they enjoy cooking? Ask to share recipes. Bring them in the kitchen with you and ask them to talk you through a new recipe. Talk about how they first got interested in cooking, etc. Tell the person that this would be a wonderful time to do a family history book so all those memories would not be lost. It's a project that not only will keep them busy, but also validates them. Puzzles are great, whether it's crossword puzzles, 1,000 piece puzzles, or a game of Scrabble. Not all memories are necessarily good ones, but the act of stimulating one's memory is good for all of us--and especially for those with Alzheimer's, or some form of dementia. Have them go through family pictures and get them labeled and in an album. If they are unable to write the family history have them record it. How wonderful it will be for future generations to hear the stories in the person's own words!

But the most important thing you can do is to let them know they are loved and to keep them stimulated. No one wants to feel useless--and when you're incapacitated that is the predominate feeling. When I was a child my grandmother lived with us and part of her routine was that she did the dishes every night after dinner. It made her feel like a contributing member of the family. It eventually got to the point where she would wash the dishes and then after she went to bed it was necessary for me to rewash them. She never knew and still felt as though she was doing something useful for the family. With a person with Alzheimer's tasks become repetitive. Sundowning is a very prevalent problem--meaning as the sun sets most people with Alzheimer's develop a real agitation or anxiety. It helps if 15 minutes before that time arrives you start them on a task--chopping or washing vegetables, setting the table, folding the laundry. You may end up bringing them the same laundry 5 times to be refolded but it has occupied their time during that transition from day to night and it has also given them a purpose. We all need a purpose in life.

Welcome to Caregiving for Loved Ones

• Good morning!
  
  I had been a caregiver for 10 years for my Mom who was convined to a wheelchair with severe rheumatoid arthritis, had lost her vision, and had both a colostomy and ostomy. Fortunately, we were always close so I wasn't in a position of caring for someone who had drifted out of my life. If your situation is one of emotional distance then you might want to reconsider whether this is the role you CAN play in their lives.
  
  When it becomes time to be a Caregiver think of it more as a Care Partner. This allows your loved one to retain their dignity and be an active part of decision making. Even if your loved one has Alzheimer's, or another form of dementia, it is important to allow them to make the decisions that they are capable of making. It could be as simple as what clothing they'd like to wear today to being involved in every aspect of their care plan.
  
  But first allow me to give you some of my own background besides my personal experiences. I'm a Masters level psychotherapist and lead online support groups, among other things. I also hold a degree in Gerontology (the study of aging). I have worked with seniors in many capacities as a volunteer, as the Director of several Senior Centers, and as a Director of a Continuing Care Retirement Community. I'm certified in Alzheimer's training and have taught several college level courses relative to aging.
  
  The decision to keep a spouse, partner, parent, friend, or disabled child at home depends on many things. First, be honest with yourself about your own personality as well as capabilities. The heart may be willing but the body may not! Are you frequently impatient, easily frustrated, working a full time job, somewhat resentful that this has happened to YOU, emotionally detached from the person who needs you? It's much better to be really honest with yourself about this because being a Care Partner is very exhausting--both physically and emotionally. We're all different and there's no shame in recognizing that you are incapable of being that Care Partner. It is a much wiser decision to say 'no, I'm not capable of this' then to end up verbally, emotionally or physically abusing your loved one!
  
  If it is a parent who needs care sit down with any siblings that you have and see if there's a way to divide time. Often times one of the children may be more emotionally or physically available than the others. If you are that person, then you will need to take steps in order to not resent the other family members, to develop a workable plan with other members for your own respite, or seek some additional private care when you cannot be with them. If it is a spouse very often there is guilt associated with 'till death due us part'---again, the safety and well-being of the person you love is utmost. If you can't do what's needed, be a hero, and say so. Initially it may seem cruel and heartless to others, and perhaps yourself--but in the long run an alternate plan may be in the best interest of your loved one.