‘Going downhill so fast’

I got a sense today of how stressed I really am, presumably as a result of Mom’s disease progression. I was walking my dogs and came upon a young couple at the end of my street with their newly adopted dog. All the dogs said hi, and we chatted and walked in the same direction down the street. I was having trouble placing them, and I asked if they lived in the house Amy used to live in. And the husband said, “We live right next door.” They were my next-door neighbors, and they have lived there for months. I apologized about 10 times. They were very cool about it, but I just took them a bottle of wine to try to explain that I’m obviously having trouble with focus and attention. That it was not them; it was me. It has been a long time since I’ve been that embarrassed.

Sundays are bound to have that effect on me for as long as Mom survives, because I am committed to feeding her lunch. I did today. I had a hard time waking her up when I arrived, and I asked an aide what the secret was to waking her for her meal. “Cold water first,” she said. Sure enough, having a glass of water lifted to her lips prompted Mom to wake up and prepare to eat. She had a couple of coughing episodes while eating, and the aide said there’s a chance Mom’s diet will be changed to soft foods that are easier to swallow. She was able to eat today, but it did take her a long time to clear each bite. She was serene most of the time, but knitted her brows from time to time when she tried to talk. I spoke in assuring tones and showered her with compliments and kisses. I took her hand at one point and she smiled and gave it a slight squeeze. I told her she can relax. She should not have a care in the world.

When I popped in on the program area Thursday before my quarterly care conference, I found Mom asleep and covered with a blanket. The aide currently assigned to Mom – they rotate every few months – said hello, and said, “She’s just going downhill so fast.” She has seen a lot. I wondered if this is a rare way for the disease to progress.

Mom, unresponsive whenI stopped in for a brief visit.

Mom, unresponsive when I stopped in for a brief visit.

At the care conference, I finally got some information about what’s going on with Mom’s changes. I had received a call a week or so ago about a blister on Mom’s foot – it turns out it was a vascular blister, meaning Mom’s poor circulation led to a wound, essentially. While she had been placed in a traditional wheelchair when she became a fall risk, she had trouble staying upright. So the staff put her in a chair that can tilt backward, started Mom on the diuretic Lasix and padded her legs and feet to support better circulation. I could feel the difference in her calves – her skin is less taut. I did mention that no one had ever called me about the transition to a wheelchair and the nursing director apologized.

She has lost 7 pounds, probably mostly fluid from her legs and feet. She is very withdrawn and has her eyes closed most of the time. She may or may not be sleeping. The activities director said she had spent about half an hour with Mom recently, and Mom did open her eyes. Mom also seems to respond to having lotion applied to her hands and arms. I said that sometimes I feel like I annoy Mom by constantly touching her, but the lotion can soothe the nature of the touch as well as provide a pleasant smell for the patient. Something to consider for future visits. Everyone agrees that Mom is a good eater, and they said that’s a good thing. “Is it, really?” I asked. They knew what I meant. But for patients at this advanced stage, the nutrients can be helpful in sustaining the quality of the skin.

Mom is now screaming again when the aides are giving her care – a shower, or changing her disposable underwear. But based on how little she moves when I spend time with her, I assume that’s the only way she can fight back. She can’t take a swing or kick anyone. And she doesn’t seem to have any words. She used to say “I hate you” to staff.

I asked if a rapid transition like this means progression will continue to be rapid. Not necessarily, the nursing director said. She has transitioned from one stage to another. How long she remains in this stage is anyone’s guess. I said I’m worried that she is fretting or in some distress. The staff members don’t think so. She may express what looks like frustration, but it’s likely that she has no awareness of actual emotions. That is comforting because I really don’t want her to fret. I just want her to be able to rest, and feel at ease, and not have a care in the world.

11 comments so far

  1. Jennifer Knowles on

    It is really weird. You think they will go on for every and then all of the sudden everything goes to rapid speed. I am so sorry Emily.

  2. Jennifer Knowles on

    All I feel is relief that my Mom is where she wanted to be and she never wanted to live in assisted living. I feel bad that we couldn’t keep her living on her own but it wasn’t meant to be. We all just do the best we can with the cards we are dealt.

  3. sherrik20 on

    I’m sorry this stage has been so degenerative for her and stressful for you. I hope things stabilize a bit for both of you.

  4. sherrik20 on

    I’m sorry this stage has been so degenerative for her and so stressful for you. Hoping things will stabilize a bit for both of you. I’m sorry you’re going through this. It sounds like she is understood and respectfully taken care of where she is no matter her state of mind and disposition, however. I hope that brings you some comfort.

  5. Barb Vogel on

    One consolation is your mother is in place where she is getting good care. I can’t imagine having to be a caregiver, thank God there are facilities that provide this service. It is so sad, Emily, I remember when your mother was vibrant and so interesting.

  6. Gemma McLuckie on

    Emily, I remember the care conference when I learned my dad had moved to a new level. It’s a shock, no matter how much you think you’re prepared to hear it. With love, Gemma

  7. Sandy on

    It is so hard to watch the rapid decline when it has been slow for so many years. It definitely seems like they should have told you about her being in a wheelchair, that is kind of a big deal. It’s nice that you are able to spend time with her, that makes you slow down and appreciate the little things. Is she in the hospice program?

  8. momsbrain on

    Hi, all-thanks so much for reading and commenting and being supportive!!

    Jennifer: You are so right. We do the best we can.

    Sherri: I am definitely glad she lives at the Alz center. It is a great place.

    Barb: She was vibrant. I never want to forget how she was at her best.

    Gemma: I am shocked at how shocked I am. I anticipated this part a decade ago! She just looks so very vulnerable.

    Sandy: She is not in hospice at the moment. I am not sure how they determine that timing with Alzheimer’s patients. I guess it is true that she could endure at this stage for … who knows how long.

  9. Gloria Mueller on

    Dearest Emily: I still go to the center on Monday morning with the church devotion group. The aides have your mom nearby and I do hope that she hears our music and singing. She has always seemed very contented comfortable and has her eyes closed. My thoughts are always with you and I especially like to remember your mom as she roamed the halls. I was told that she and my husband held hands occasionally as they took a stroll.
    That makes me smile. I’m terribly proud of your devotion to Bonnie’s care.
    I learned an a great deal during my time attending the support group. Gloria Mueller

  10. mica on

    (((HUG))) my mother is at the packing to leave stage and still ambulatory late stage six…. I truly hope I find a nice place – peace and strength to you

  11. momsbrain on

    Gloria, it’s so great to hear from you. Thank you so much. I wondered if you still go there on Mondays. I don’t know if I knew she held hands with your husband. There was a time when Mom was very social and active and, as much as I miss my old healthy Mom, I also miss that stage of her illness, too. I don’t think I ever expected to say anything like that. I choose to believe she does benefit from the singing and music on Monday mornings. She always loved music.

    Mica, thank you for the hug! Right back at you. I do feel lucky about where my mom is – she gets very good care and felt comfortable there from day one. Good luck in your search! Thank you for commenting.

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