During the earlier days caring for Mom while learning about what was happening to her between normal and abnormal aging, my first instinct was to save her. I wanted to swoop in to prevent further deterioration and help provide a better quality of life. Wouldn’t you? Unfortunately, this is a two-way road which requires a willing participant who wants to be saved.
My help was not received as intended. I was perceived as overbearing and unkind. My family began to see me as the villain as I began to engage with Mom by fulfilling her needs as a person living with mixed Dementia rather than allowing her to waste away in her own home. Every decision made came with a sense of confidence knowing I was doing right by Mom yet the reaction from the family added a dose of guilt.
Moving Mom into our home was a decision left up to her until Dad passed. Although they had been divorced for many years prior to his passing it seemed to be the moment to break her heart even further. Mom would have died from grief had we left her to continue living in her own home. The signs were all over her home. It was a relief to ask her to move in with us and not have a fight for once. We did not have to do a hard sale at this point to convince her the time was upon us.
Almost three years later, I am once again at the point of making the hard decision of transitioning Mom from our home to a facility. Is the time upon us once again? This time, the signs are all within her. What she says or doesn’t say. What she can or no longer can do. How she navigates the house or avoids it. The amount of assistance now needed than three years ago is clear.
I see it. I know what step is next but knowing does not make taking the next steps any easier. Regardless of financial resources, the nagging guilt is still there. Historical data does not favor nursing homes and the type of care the clients received. My mind runs away with he what if’s. Is that really the better thing to do? Surely, we can adapt and find better ways for her to continue to reside with us for longer.
How much longer would suffice?
Would keeping her in our home be for my benefit or hers?
Am I risking her safety by keeping her home with me?
This is a decision that should be made with the family as a whole, so everyone is on the same page. If your family resembles mine, then being on the same page may not be possible. Each family is different just as each type of dementia is cared for differently. We all face the same decisions to make eventually. When it comes to our loved ones, they need an advocate to speak for them when they can no longer make this choice on their own.
Mom’s first response to me was she would commit suicide if I made this choice for her. As I spoke to other families and facilities to gage the process, I was assured this response is normal for someone with dementia. I also was provided with additional signs to consider aside of what I was already seeing.
1) Aggression – Is there physical, sexual or violent aggression happening?
2) Caregiver Stress – I used to say this journey is not about me but there does come a time when it is about the caregiver. Added stress from caring due to fatigue can propagate verbal or violent abuse to the care recipient. Avoidance behaviors and disabling anxiety.
3) Escalating care needs – Has their care needs gone beyond your physical abilities? Beyond assisting with ADLs. Does this escalating care put the caregiver’s health at risk?
4) Home Safety – Are they unsafe in the current home? For example, fall risks increasing. Stairs more difficult to navigate. Showers easier to slip and fall in or by.
5) Sundowning – Are they becoming more agitated later in the day? After a long day of caring for your loved one and the needs increase as the day light burns can raise caregiver burden.
6) Wandering – the probability of falls and injuries increases when they begin to wander or attempt to “go home” elsewhere.
After some time had passed and I came to terms with the fact that caring for Mom also meant losing family ties, it did not help to make these types of decisions any easier. Some decisions come from the doctor as a matter of fact. Other decisions remain at the caregiver’s discretion.
I realized this decision for me is weighted because it is another step in the grieving process. In order to become her savior at this point in time, I must also be the villain to others. I grapple with the anger of their added guilt and my fear of relinquishing care and even control to the professionals. I have not failed her as my inner critic cries out. I have simply accepted that the will of God has placed us where the Grace of God has protected us.