My Second Long Goodbye: Chapter 13
It has been only a very short while since my last post but something is occurring that compels me to write this one. I need to explain that while my previous posts mainly concern my own journey with dementia as a caregiver and spouse, they occasionally reference the journey of others as well. For those of you who have read what I have written before you are well aware that I belong to an Alzheimer’s support group and that I highly recommend that if you are on this journey you join one as well. Being in this group means that I am not solely on my own personal journey but also on the journeys of the other members of the group. That being so allows me to experience details of the dementia journey vicariously that are not part of my particular one. Which brings me to the reason for this post.
How placement went for our family
As I have written before, placing my wife in a care facility was the hardest decision I have made in my life. I have chronicled that experience in detail in earlier posts and have also continued to detail what life is like both for her and for me now that we are living separately. My experience has been and continues to be mostly pleasant given the circumstances. I continue to visit and when I do my wife is mostly content and happy and we spend hours listening to music and cuddling or going for rides or occasionally going to dinner at friends’ houses.
When I leave her or take her back to her residence there is never any difficulty nor does she ever ask to leave with me and return home. I think this is because of three things. First because of her personality; second because of the way she was originally place where I brought her there and left without returning for 5 weeks giving her time to acclimate to her new surroundings; and third because of the quality of her surroundings and the incredible empathetic and loving care she was given by the staff and owner of the home.
I am so fortunate that things have worked out so well in this regard and I thank God for it every day. One of the advantages of how my wife’s placement occurred was that for five weeks although in contact by phone I never saw her nor was confronted by the difficulties of her adjustment in person. I never had to experience her frustrations and by the end of the five weeks they were minimal and manageable.
My sister’s experience placing her husband was also fairly easy and positive. She originally placed him in a home for a week while she was going on a vacation and when she returned he was acclimated to his new surroundings and so she never brought him back home and he lived comfortably without incident in his new home until his death.
What others in my group experienced
While both my sister and I have had relatively easy times with placing our spouse in care homes I don’t want to leave people with the impression that this is easy and that everyone’s placement experience will go this well. To do so might set someone up for a very unpleasant awaking when they need to place their loved one and that would be tragic. So with the experience gained from interacting with other support group members who have placed their loved ones, I want to share a couple of their experiences so to better prepare people for what might occur.
One gentleman in the group placed his wife in a large corporate run facility. He accompanied her to her new home and when he prepared to leave she begged him to take her with him. He was in tears as he left and riddled with guilt. He was in no position at the time to deal with her needs at home and felt he was doing the right and necessary thing in the best interests of both him and his wife. The following day he returned to visit and found his wife distraught and begging to come home.
This scenario continued for months and never got better. Each visit found his wife in tears and wanting to get out of here and him feeling intense guilt and weeping profusely as he left the facility. Each week in group he would break down and we would all feel the intensity of his grief and try our best to comfort him but to little avail. After several months he finally brought his wife home and hired in home caregivers for several hours a day to do what he was not equipped to do to care for her.
Within a matter of weeks she was gone! For him the pain, the guilt and the grief were overwhelming. Only now more than a year after her death with much counseling and support has he begun to turn the corner and heal! I think for him the hardest thing to deal with was the guilt he felt for placing her!
The story that prompted this chapter
Truly what prompted this post at this moment is what is currently happening with another member of our group. She has been dealing with her husband at home for several years but a month ago decided that she was no longer capable of giving him the care he needed at home even with regular caregivers coming in to help occasionally. So reluctantly she found a place and moved him in. She was there every day at first but the caregivers soon asked her to stay away for a short time to give him a chance to acclimate.
She did so and then resumed her daily visits. One of the things that has to happen when someone is first placed is that the medications they are on need to be monitored and adjusted to allow them to function and adapt in their new environment. (In my wife’s case the doctor said it could take up to 6 months but it really took much longer than that to finally get then right.) In this case the medications are not working well and he was acting out and making it difficult for the caregivers to handle him.
He became violent and had to be restrained and eventually hospitalized. As I write this he is supposed to be being released back to the care home. What happens next is still to be determined. But I write this to caution people that placement is not always easy and can cause much pain and anxiety and guilt for you when you make that step. I want to make sure that I am very clear that each journey is different and yours might be easy but there is no guarantee so I want to warn you to be prepared for whatever comes and to have support for yourself to help you manage whatever comes!
Even when you know in your mind that placement is necessary you will feel a sense of guilt because your heart will break and you will never fully convince yourself that you did all you could do before you placed! When you see someone in the group who was able to go the entire distance without placing their loved one you will judge yourself because you will not be able to forgive yourself for not having the skills that person has who cared for their loved one at home until the very end.
So I am here to say that this journey is unique for each of us and we are unique in our abilities to cope along the way. You will feel guilt, and anger and pain and frustration and a sense of being overwhelmed and of being a failure but when you feel these feelings understand that you are a person who is doing the very best you can with the talents and capabilities you possess and your health is equally important to the health of your loved one.
Many studies out there point to the fact that caregivers often neglect their own health while providing for their loved ones to the point they die first! You are of no use to your loved one if you don’t take care of yourself and learn the limits necessary to protect your own health.
This was a very difficult post for me to write because I fear it might scare some people out there who face the very hard choice to place the one they love. I don’t mean to frighten anyone or cause them more distress or anxiety but I do want to make very sure that people are as prepared for whatever might come as they can possibly be. I hope this is taken in the spirit it is meant to be as a caution not as an alarm. I only mean to be as helpful as I can!
Read the series from the beginning