The single thing that I’ve dreaded most since my mother’s stroke has come to pass. We transferred her to a skilled nursing facility.
I thought I was prepared for having her in the nursing home, but I completely fell apart. The feelings of guilt, shame, and defeat about not being able to care for her at home just overwhelmed me. After nearly four months of struggling through, I was right back to the worst case scenario we were trying desperately to avoid right after she had the stroke.
After migrating between the rehab and the hospital several times and, finally, going to a hospice house, it seemed that death was not imminent for my mother. It was also clear that she really was not going to get better. Truthfully, she has been declining since her first rehospitalization after the stroke. She did pretty well in rehab the first month after the attack, but appeared to start on a downhill road when she went back into the hospital for some auxiliary issues. That road included several moves between the hospital and rehab facility. That road was pitted with many physical, emotional, and mental obstacles. While the doctors were able to stabilize the physical obstacles, her ability to process thoughts and communicate seemed to be fading away.
It appears that she continues to suffer from stroke-related language and cognitive impairment. This is fairly common in stroke patients and, given my mother’s particular set of circumstances, it is likely that it will get worse over time. It is similar to Alzheimer’s Disease, except that the cause and progression of the condition are different. The condition can cause death, but usually the patient passes from something else first.
By the time she went to the hospice house, the medical staff believed that the combination of the obstacles she was fighting would prove to be too massive for her to overcome. They believed it was likely that she would pass within a few days or weeks. However, something clicked in my mom’s brain, and she started to adjust to her condition. The hospice staff changed the prognosis. They still believe her condition is terminal and they are still going to provide supportive care, but they no longer believe she is in her last days. Because the actual hospice house is only intended for patients in the last stages of death whose symptoms cannot be managed in a “regular” (home, nursing home, assisted living, etc.) setting, the staff reluctantly advised me that it was time to find a longer-term residence for her.
Before she went to the hospice house, I worked with staff from what I call an “assisted living plus” facility. It is an assisted living facility with additional medical certifications that allow them to provide a higher level of care than most places. For most of my mother’s illness, our goal had been to get her strong enough to be able to live there. It seemed an ideal answer. It would be like she was living in a little apartment of her own, with privacy and as much independence as she wanted and could manage. Unfortunately, by the time she was facing release from the hospital for the last time, the assisted living facility staff evaluated her status and found that her needs were just too far beyond what even they could handle.
Kicking and screaming, I started looking at skilled nursing facilities. This is a tricky matter for many reasons, but one of the most difficult to manage is the fact that many nursing facilities operate at full capacity. They have lengthy waiting lists. In evaluating the residences, I had to balance quality ratings from Medicare, online reviews, my own observations on visits, availability, and proximity to my home. Of course, the facilities with the highest ratings were also the ones with the lowest availability. I ultimately picked one that seemed okay, had reasonably good ratings and reviews, and had availability. An added bonus was that the facility is very close to my home.
When I checked on my mother once she was at the new place, she seemed okay… calm and content. I was far from okay. The residence was not bright and shiny and new. The neighborhood wasn’t affluent. At times, I could hear other residents crying and yelling. Some of the other patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real. I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was about when she was living it fully. I wanted her to be in a setting that would help her form a social network with people who could become friends. I didn’t want her to be the most able person and be surrounded by people living shadow lives. I thought that would depress her and lead her down the same shaky path. Now, I was leaving her in a place where she was living with people in just the situation I dreaded. Unfortunately, the gut-crusher is that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that it isn’t so much that people who live in nursing homes have a severely reduced quality of life. It is more the reverse. People who have a severely reduced quality of life move to nursing homes.
Paradoxically, part of the sadness and guilt over placing my mother in the nursing home comes from the fact that my mother’s cognitive and language skills seemed to improve somewhat over the past couple of days before the move. Originally, I didn’t feel quite so bad about the nursing home because my mother seemed to be withdrawing from the external world- not being very communicative or alert. Everything I read about hospice talked about this withdrawal as being typical when people approach the end of life. The way she was withdrawing and sleeping so much, it didn’t seem to matter too much where she was. As long as it was clean and safe and met her basic needs and I was there frequently, I didn’t think it was going to make much difference to her. Then, just as the hospice people were getting ready to transfer her to a nursing home, she started consuming a bit more fluid and nourishment, staying awake much more of the time, and talking more clearly about more sophisticated ideas than she had since the stroke. I was almost sorry because it made the move to the nursing home seem worse.
Still, as time goes on, I am encouraged. My mother is truly only experiencing the tiniest sliver of the quality of life she enjoyed before the stroke. However, she continues to seem content, comfortable, and reasonably happy at the nursing home. Her cognitive and language skills are spotty, but I appreciate that there have been times when I’ve been able to communicate with a person who really did seem like my mom again. Because the nursing home is the longer term living situation, a lot of things are easier… both for my mother and for me. The health care professionals are very responsive and practical. The administrative side of the operation has been helpful and understanding. Between the nursing home staff and the hospice folks that work with them, they are finding ways to make my mom’s life more comfortable. They spend time with her. They talk with her. They are truly caring. On the other hand, they respect her wishes and don’t bother her by pushing her to do things she doesn’t want to do.
Maybe the most important factor in my journey towards acceptance of this new reality is that my role as caretaker is changing now. Since the medical staff is pretty much on the same page as my mother and me as to the type of care she wants, I have to fight fewer battles as her advocate. Since she is now where she is going to be for whatever time God has left for her in this world, I don’t have to keep analyzing different residential options. I’ve retained a law firm to help me with the financial burden and I’m working through the administrative issues more methodically, so I find I am spending less time and energy on those problems. My caregiving is now much more about just being with my mom, showing her I love her, and letting her love me.
Since my mother has been in the skilled nursing facility, I get to be just a daughter again. That has been the best unexpected positive result…. Of the worst day of my life.
My mother has been in the skilled nursing facility for about two months now. All things considered, everything is going okay. My mom seems reasonably chipper and content. I am with her at least six days a week. I can’t completely shake the sadness and guilt, but I’m holding it at bay most of the time. My current challenge is finding new ways to communicate and engage her as her language disappears and her thinking becomes more muddled. Anyone have any ideas for me? I’d appreciate any suggestions! Please share your perspective by leaving a comment. In the alternative, you can email me at email@example.com.
Have a loving day!
12 thoughts on “The Worst Day Of My Life”
Hi Terri. Thanks so much for sharing your story. You are such a strong advocate for your mom!
As far as communicating with your mom, I don’t have any specific tips to share, but I will say that in my past life (as an NP, and also as a daughter to a dad with dementia) I came to realize that while someone may not know or understand everything that is said to them, the person is aware that someone is there that cares and loves them. That is probably the best gift we can give at this stage of life.
My thoughts are with you as you go through this difficult time. It’s not easy, I know. Your mom is so lucky to have you. You and her other caregivers will be the ones that let your mom know that she is cared for and loved.
Thank you so much, Carole. Your comment is very encouraging, especially coming from a person with your experience. I know you are right that the most important thing is to be there and to love her. It just doesn’t feel like enough. As a friend said, though, nothing is going to feel like enough. Thanks so much for caring!
I cannot help with the communication element. I recall with my dad who had aphasia (sp?) following his stroke that it was a lot about being with him and taking with him (and not expecting any reply).
One thing I’m working through with placing my SIL into a senior living facility right now… it’s really about thinking what they need… not what YOU think they need. It’s a subtle difference, but I had to come to the conclusion that added amenities, nicer/newer common rooms, and more social activities wasn’t really what my SIL needed. I liked it, but with her cognitive limitations, she doesn’t care/notice.
Thanks for your comment, Pat. It is helpful to have the reminder that what I want in s residence is not necessarily what is important to my mom. We talked about that when she first moved from California to Florida. New, shiny, and slick were not on her priority list at all. In fact, they kind of made her nervous. The nursing home is a bit worn and dingy, especially compared to the modern rehab facility where she was, but the employees at the nursing home seem a lot more responsive and caring, which has to be more important.
Thoughts and prayers for the journey you and your mom are on. Joy
Thanks, Joy! 💐
Terri, you’ve been along on the your mother’s journey as she is affected by the stroke, the effects of which are so out of your control. What is in your control is the ability to be a loving, caring daughter and advocate for your mom in the care setting. I like what you said about being the daughter and leaving the custodial care to the care givers. I have read that people with dementia may not know cognitively who you are but they know in their hearts that you are someone who cares, just as Carole said. It seems that you have been in a state of transition since your mom’s stroke and that’s a hard place to be, not unlike the transition phase of labor. I can only encourage you to ride this out and take care of yourself in the mean time.
Thanks for your kindness, Mona. I guess there really isn’t any answer other than to just keep swimming.🐟
Perhaps you’ve already considered this communication tool, but music is a proven way to access memories. Her music, from “her” era, can elicit memories of what she was doing when that music was most popular. Some families are surprised at the conversations they have with their loved ones when a certain song plays. We tried loading songs onto a player for my MIL, but her sudden decline after a hip fracture was so precipitous that she could not figure out how to play the songs. Staff at your mother’s facility may have suggestions. Before falling, my MIL had been living alone but planning to move into an assisted living facility after the first of the year when she fell and broke her hip the week before Thanksgiving, 2015. Some family members, including me, had been campaigning her sons to move her sooner, as we thought she was declining too quickly to be safe alone. Once she fell, medications, pain, and/or disorientation precipitated that precipitous decline, even though her hip fracture was mild and required no surgery. She fought nurses, punching them and pulling back their fingers. She screamed non-stop, she refused to eat, and she was observed moving down to the floor and then screaming that she had fallen again. She was stepped down for rehab in the hospital, but she could not or would not participate. Our saddest day was when we were given less than 24 hours to move her to a skilled nursing unit. As she was wheeled on the stretcher toward the waiting ambulance, she had her most lucid moment in a week and asked my husband, her son, “I’ll never go home again, will I?” Yes, you will always feel sad, but you will come to terms with that sadness, too. This is the price we pay for caring about the well being of our loved ones. Because my MIL screamed so much and so long and was so combative until she was too weak to fight, she kept losing her place in nursing homes, and we would have to find another place. My MIL had enough money to pay privately for nice places, the kind that kept kicking her out, but the kindest, most engaged staff with the lowest turnover turned out to be at a run-down older facility. We made surprise visits, not always announcing our presence to my MIL’s assigned nurses for the day and observed them coming quickly to her door with kind inquiries whenever they heard her begin crying out again. You’re not neglecting your mother when you settled on a place that might not look the spiffiest but is closer to you and has a knowledgeable and kind staff. Good luck on this journey you’re taking. I’ve already told my daughters that they are not to worry a moment when it’s time for me to go to such a facility.
Thank you, Linda, for sharing your story. It helped me more than you can know. Thanks, also, for the suggestion about music. My mom has never been really into music, but I think I understand. She might not really concentrate on the song so much as the memory of her life at the time the song is popular. I’ve tried singing a little, but not much response. Of course, that could be my singing! I think I’ll explore the music idea a little more.
Hi My Dear Friend in America,
I continue to pray for you and your mum. It’s definitely not what you envisioned happening upon retirement and moving to Florida. You are an amazing daughter, always have been! I haven’t forgotten about you here in New Zealand. I do enjoy your blogs, but I feel I am sharing you now, and should just write you a long email! Until then, just know I’m thinking of you! Shari xo
Hi there! Thank you for thinking of me. It is always wonderful to hear from you. Yes, my current situation is not what I anticipated for my retirement, but I guess that is really what the blog is all about. Very rarely does life deal us the cards we expect. We just have to change our approach. Not my best skill, I’m afraid! We do need to catch up. I’ll email you soon!
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