4 Regrets Many Caregivers Share

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Common Caregiving Regrets
I recently asked an online support group what they felt were the biggest mistakes they’ve made in their caregiving duties. I expected a long list of items that could be used for an interesting post that might help others. Much to my surprise, the collection of regrets was very short. The following points were mentioned the most.

1.“I wish I’d gotten help sooner.”
This sentiment was shared by the caregivers more than any other. Many of the caregivers felt they’d waited too long before hiring help or asking for help from family and friends. It’s an easy mistake to make. The progression of a disease like Lewy Body is gradual for the most part. There are periods where the decline is more rapid, but, as a rule, it takes years before our loved ones reach a point of being totally dependent on care from others. Usually the problems begin slowly for example, they may have trouble getting up from their chair one day, but by the next they’re able to move without help. As caregivers, we tend to forget the tough days until these problems happen more and more frequently. Before we realize it, our LOs need help each time they stand. It’s a change that slips in gradually. We start out able to leave our LO to go to the store or to work, then one day, something happens that makes us worry about leaving them. Before we know it, they can no longer be left alone even for short periods. It doesn’t happen overnight, so we don’t think about it as being a permanent change at the time.
All of the declines tend to work in this way, with periods interspersed where our LOs return to a more normal functioning level for a while. As caregivers we tell ourselves we can handle it without help. After all, we’ve been doing it up to now, what’s different?
Before we realize it, we’re doing all our loved ones ADLs (activities of daily living) and getting up several times a night as well. Exhaustion and physical pain from all the lifting sets in and the end of our rope comes much more quickly than we expected. We become tense, tired, and snippy.
Many caregivers wished they had hired help before reaching the point of breaking. This is why developing a long term caregiving plan ahead of time can be very important.

2.“I regret telling my husband I would never place him in assisted living. I had no idea what I was in for.”
Another common mistake caregivers mention is making promises they were unable to keep. Lewy Body Dementia places stresses on caregivers that most illness don’t. Not only are there the physical issues of lifting, bathing, and toileting, there is a mental component that is often the most difficult challenge. It’s been said that LBD is like having Parkinson’s, Alzheimer’s, and Schizophrenia all at once. Many times their LO becomes combative and abusive. They will often have delusions that their caregivers are poisoning or stealing from them. If the caregiver is their spouse, a very common delusion is that their spouse is cheating on them. They might call them horrible names and even threaten divorce, an often heartbreaking scenario for a caregiver who is struggling every day to give the loving care they need. The mental strain on the caregiver can become overwhelming.

There are also the issues of how the illness effects a family that has chosen to care for a parent or other family member. Caregivers can often find themselves with children or spouses who don’t understand why their lives have been turned upside down for years in order to provide care for a grandfather whose demands are unrelenting and borderline abusive. Most caregivers have no idea the types of challenges facing them when they start their LBD journey.

3.“I wish I had held my temper more and not gotten angry so much”
This regret is directly connected to the first two in the list. When caregivers reach the end of that proverbial rope, their tempers get short and they snap. Days without sleep, constantly repeating instructions, back and shoulder pain from lifting…the list goes on and on. Caregivers are human and exhausted, frustration, and physical pain can shove anyone to the edge. Hiring help or placing a loved in assisted care gives the caregiver the rest they need to function normally. Those who place their LOs in assisted care or who hire aides usually find their relationship improves dramatically. The time they spend together is no longer consumed with caregiving duties or resentments. They can actually enjoy being with their loved ones while getting the personal time to rest and get away periodically.

4.“I wish I’d talked to him early in his diagnosis so I would know what he wanted me to do.”
LBD requires caregivers to make many difficult decisions. Not only are there financial issues that must be handled, there are physical decisions that must be made at the end of the illness. Does your LO want a feeding tube when they lose the ability to swallow? How about a DNR? At what point would they consider hiring help? Do you have POAs?
As time passes, your LO will lose the ability to make important decisions and if you know what their wishes are while they’re still capable of thinking clearly, it makes the choices much easier to make when things become more difficult.

All in all, I was pleased to see that most of the caregivers had very few regrets. Being a caregiver is difficult enough without adding guilt into the mix. Caregivers do their best every day to provide care and love to the person entrusted to them. There’s no room for guilt.

 

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3 responses »

  1. I think all of your regrets are “right on”. Another big regret I had was that I did not discuss LBD more with his primary care physician. I mostly dealt with the neurologist. But when he entered the nursing home the neurologist did not come to the NH and we were left with a PCP who knew nothing about Lew Body Dementia. I wish I had been better informed and had obtained a more informed PCP.

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  2. I wish I had more patience. Throughout our 51 year marriage, I relished the time together and the independent time. When retired, I counted on his scheduled golf games to have time to do what I wanted. I can’t say I resent his lack of independence, just that I want more of my own independence. When I was working, I just knew that a 25 hour day would solve my problems. Now I think I need a 30 hour day where 6 hours were mine would really, really help.

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  3. I agree, Irene. My husband and I were never attached at the hip either. We each had careers and hobbies and I miss that free time too. I love being with him, but sometimes I just need some “me” time.

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