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The Caregiver

What you wish you knew before you accepted the role

As I sit here tear-stained, my heart is flooded with a different kind of grief, yet grief nonetheless.

So many questions I would have for my mom. How do I take care of dad? How do I motivate him to move forward without you (even after you've been gone for almost 16 years) and live life fully alive? How do I deal with his issues and the issues that are now and perhaps have always been between us? How did you manage to take such good care of him for 37 years? Would you be disappointed in me for being tired and struggling? Have I failed you and my promise to take care of daddy for you?

My daddy has lived with us for the last seven years. It has grown increasingly difficult. I see his fragility. I see his frustration and lack of patience. I also see how difficult that life is getting for him. He was just told he cannot drive anymore until he had surgeries to remove cataracts and is completely blind in his right eye. I had to force him to go to the doctors by forbidding him to drive with my little ones. I literally cried in the surgeon’s office as I sat there watching him undergo his eye exam that would prove my fears of his blindness to be true... I don’t know how he was driving all these years with both eyes filled with cataracts and severe damage and blindness to one eye. These are things I have been trying to get him to deal with for years but he would always try to convince me he was “just fine”. Truth is he was in denial and so was I. He is aging and he doesn’t want to let go of his control and realize he has limitations. I want him to be the strong dad that I always remembered not the needy one that I can never seem to take care of well enough.

I'm also now realizing my own limitations, mentally and physically, my own lack of patience, my frustration in that I cannot make him want to live or deal with the continued heartache of losing my mom. I lost two parents that day. And honestly...I'm exhausted. The daddy I once knew died the day my mom died. He was only 59 years old. Their marriage wasn't perfect but he loved her so faithfully and has not found the desire or gotten the help he needs to move forward without her.

Caring for an aging parent is way more difficult than I ever thought. I share this with those of you in this season of life out of a deep concern for everyone involved… because everyone is affected whether positively or negatively when an elderly parent comes to live with you. Please know that there have been wonderful times as well as some really hard times. I love my daddy and at the time I believed it to be the very best thing for him. I just feel the need to be honest about our experience and although I don’t believe in our case I would have done things differently, I definitely would have put more thought into it instead of raw emotions. I would have set some things in place and made firm boundaries that may have prevented a lot of what we have had to walk through these last seven years.

My advice for those considering bringing an aging parent is:

1. Really take time to pray about it and weigh your options (Seek wise counsel) before you commit to something like this.  If I had the opportunity to go back and would have been better informed I believe we would have made healthier boundaries and would have been more realistic in my thinking of what my dad living with us would truly entail.  Don’t get me wrong, I love my daddy and there have been good memories, but through the years life has become more challenging not only with his health but with my own (something we had not foreseen).  Also, being a wife, mother of 9 children, a business owner, and in ministry has stresses of its own. Sounds like a lot of “me, me, me”, but if you are going to be the main caregiver you will need to take “you” into consideration. (The first two years my dad was with us I spent countless hours at doctor’s offices, hospitals, surgery centers, etc. nurturing him back to health. What I didn’t realize was that was countless hours and days spent away from my husband and children, the youngest of which had just been born.)

2. Make sure you consider ALL available options before making the commitment to bring in a parent. Looking back in hindsight, I do believe that there were other options that may have in the end been better for my dad and for our family relationship. One option would have been an assisted living community where he would have a community of others that could relate better with his season of life. (James and I have already decided that is where we are going when we downsize. There are wonderful communities that offer a wide variety of carefree living such as cottages, villas, condos, with a vital community of people in the same life stage and others to provide for all of your needs such as exercise, meals, housekeeping, and medical). My dad always says, “I don’t need other people, just you all”.  When he says that I’m thinking “We need you to need others”. 

3. They need to agree that you have a say as to when they need to go to the doctors and they need to trust you to make that determination. We have made countless trips to the ER and almost as many hospital stays (Including Easter and Christmas) due to my dad refusing to go to the doctors or waiting until the last minute.  What they must understand is that they are not the only ones affected by their health.  The caregivers who spend countless hours away from their families at the hospital advocating for them also are affected. (Make sure that you consult an attorney and have them sign a Health Care Proxy and a Power of Attorney so that you can have a say in their medical care.) Honestly, as I look back I see that this is an area he would have benefitted in if he was living in an assisted living community. If there he would have been much more likely to listen to the advice of a healthcare advocate over mine.  That is something that he flat out doesn’t do with us and has been at the root of some of our greatest issues.

4. Set up boundaries and rules and make a covenant that all family members sign that are going to be involved in their care.  This is so important that you do it in writing. Verbal agreements DO NOT work as you have nothing to point to when situations arise or when years pass and situations change. For example, we told my dad that he would have to agree to counseling in case a disagreement arose that we could not settle ourselves. I did not grow up in a house that believed in counseling so this was a stretch for him.  He agreed initially but once established he refused to go, making it a very hurtful situation for all.

5. Make sure that you are not the only caregiver. A team approach works best. Try to make sure if you have siblings or extended family they are going to be committed to helping. (I have one sibling who unfortunately has chosen not to be a part of our life so my dad’s care is completely the responsibility of me, James, and the kids). If is important to have a “team” mentality when caring for an aging parent.  Even if one sibling is going to carry the main responsibility the others should plan on having a part (Also have them sign the agreement mentioned above to refer to if needed).  Having the opportunity to go on a vacation or have the parent go to visit others for a period of time can allow for some much needed rest from caregiving

6. Be prepared…It WILL change your relationship with your parent, your family dynamics, and your priorities!  A healthcare advocate told me recently that our roles have switched. I am now acting more as a parent and he more as a child. I know this might sound harsh but it is the reality of aging. As we age we lose our capacity to reason and this is often where the battle of wills comes in. If you have a stubborn or strong-willed parent you are going to have a hard time in this area. Warning: Whatever your parent’s personality is, it not going to change just because they come to live with you. This is something to seriously consider.  Much of the damage to our relationship is due to this.  I love my dad but have chosen to live life differently in our home compared to the one I was raised in.  Becoming a Christian at the age of 22 drastically changed my life and my perspective.  Although I know he is proud of me there is much we do not agree on spiritually, parentally, etc.  Be aware:  If you have children at home it will also impact their relationships. When healthy boundaries/expectations are in place and the relationship is good it can be a rich and powerful experience. However, if they are not then your kids can end up in one of two camps. My children are a BIG part of caring for their grandfather and while there are wonderful things to learn about honoring and serving our elders there are also possible conflicts along the way.  The major one is they have to deal with my relationship with my dad. (Since I have been dealing with health issues myself these past few years I see that some of them have become protective of me when it comes to friction with my dad as they know if affects my health and are often frustrated with him, especially my eldest son and of course James, who has in all honesty been a better son to him than I have been a daughter).  They also have to deal with his frustration when things are not done on his time or his way.  I love that they continue to serve and am proud of them, but a few of them have pulled away emotionally or began to resent the granddad they used to adore. 

7. Lastly I would tell you that if things do not work out then you have to be willing to have a back-up plan. By far the best one I’ve come across and am learning to do is to “Let go, and let God”! Life is life and it doesn’t stay the same.  Financial situations, new or added health issues/decline with your parent, or maybe even yourself, or your spouse may arise, or other family issues or dynamics may come into play that were unforeseen.  Both you and your parents have to be willing to be flexible to change the plans for the good of all involved.  In our case after seeking godly counsel, struggling with the emotions of it with many tears and prayers, we had to give my dad an ultimatum of sorts if he was to stay with us.  We also reassured him of our love and our desire for him to be here but that he had to be willing to begin to give up control if it were ever to work out. I even began looking into different options for him. (For those who know me, they know that was a pivotal point for me on this journey as I love my daddy and also feel very obligated to care for him since my mother’s death…at times to mine or my families detriment). Thankfully after many difficult conversations and uneasy family settings he decided to give this whole “other people” thing a try.  I’m happy to report he now has a team of wonderful caregivers coming in every week for physical therapy, nursing, and even a buddy who takes him out shopping! He can see now too after having cataract surgery and is looking forward to getting back on the road again someday. He won’t get there overnight but he is making an effort and for that I am extremely thankful. 

I’m learning something else along the way. Something that I have taught others but needed to be taught myself. I’m learning that loving someone doesn’t always mean what we think it does. I’m not a failure if I cannot continue the journey in the manner we set up originally. My dad is not a failure at a father just because he is aging and losing some of his abilities. It makes us both human, both frail, and both in need of God’s grace on a daily basis. It has made me think purposefully about what would be best for our children in our later years. It has made me more aware of the vulnerability in “growing old”. Whoever said “these are the golden years” was lying. These are the years of learning to let go and the beginnings of looking forward to what lies ahead in eternity! No more tears, no more sickness, no more awkward family moments.

If you think of us please pray for my dad to become fully aware of the love that God has for him and for him to begin to look beyond the earthly vail into the fullness of eternity with confidence that He will be reunited with my mom and made whole in the presence of his Savior someday but to choose to LIVE LIFE FULLY ALIVE as long as he has the ability to do so. Pray for me to love beyond my human limitations and to have patience as I walk beside my dad on his last leg of his earthly race.

For those of you who are facing the question of “What does caring for my parents look like”, I pray that the Lord would give you direction and peace in whatever decision you come to. For those that know of families that are caregivers for one or both of their parents, I would encourage you to come alongside them and do what they may not be capable of doing but what their hearts long to do. Invest a few hours to come visit with their parents or invite them to your home for a meal. I’m always amazed at how much my dad converses with strangers. Truth is he loves to talk but the stress of our relationship has gotten in the way of much of that. I love that he is letting others in and I see the void it fills in his life. It also lets me “off the hook” of meeting all of his needs, which I am incapable of doing anyways.

James visited with our pastor a few weeks ago concerning all that we are dealing with in this season of caregiving. After pouring his heart out our pastor told my husband that caring for an aging parent is the ultimate act of worship one could do for the Lord. Our hearts were encouraged by this thought and though we fail probably more often than we succeed in these unchartered and often uncertain waters, we know that we are not alone. He is here! His love keeps us hope-filled and His strength enables us to forgive each other and keep moving, even on those days where we think we cannot take another step. ~All my love, Sherrie

“Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.  Whom have in in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart, and my portion forever.”

Psalm 72:23-26

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