Connect
When Living with Alzheimer's evolves into Dying of it
Today, in a conversation with our gerontologist, we decided to start in-home hospice for my husband.
I was shocked three weeks ago when his demeanor, strength, and ability to walk plummeted. Since then, I have been incessantly investigating, monitoring, and acting on the symptoms, medication, medication side effects, and new symptoms and data. That is, when I was not pitching in on the basic caregiving (1. because some things now require two people for full safety, and 2. to reassure him with my presence).
I sensed that there was some chance that we could make it out of this period with something like his former self. I wanted to keep that option open by helping him keep the ability to walk despite all the sleeping/resting. This past Monday, as we finished "taking a walk" inside the house, it pained me to see how hard he was struggling on the last 10 feet to the bedroom. It made me realize that I needed to get clarity on whether the scenario of a rebound was realistic: I did not want to push him to do things if in fact there is low, or no, chance that he can benefit from those efforts.
Gerontologists see so many cases. Ours had reviewed his record for the year, listened to all that had happened recently and how Gary is now, and told me that this is the beginning of the end. Having considered that as one of the possibilities over the last weeks, I was not shocked. There was even a kind of relief in knowing what scenario to manage instead of managing to three different possibilities. I can now optimize within this sad but important stage.
Biggest Change. Till now, my primary goal has been to ensure that Gary (and we as a couple) enjoyed life as fully as his capabilities allowed. As the physical symptoms appeared, I added the goal of eliminating discomfort. Now I have to face changing the priority of those goals. The doctor says that his brain may have been damaged beyond the point of being able to process the kinds of things that we did for enjoyment. And I am sure that I want him discomfort-free more than anything else. In our case, she indicated that letting him sleep is more important than preserving his ability to walk.
She described the palliative care and hospice options. She recommended hospice because of the greater support that we would receive. I look forward to having continuous access to their deep expertise so that I am not alone interpreting symptom changes, equipment options, etc. I also appreciate that if things like hospital beds and lifts are eventually needed, they will manage that, and even get results much faster.
I realize now that the sadness that led to my previous post was justified. I will probably never have Gary back as fully himself again. I fear losing the vivid memories of him as I focus on taking care of him mainly in 'patient' mode.
I know I have a lot of emotional and practical things to learn about getting through this stage. If any of you have advice, I will read it with gratitude.
Like
Helpful
HugInterested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Connect
@memoriestomoments You have a very special place in my heart this morning, and I will pray for you and "your Gary." I'm saddened to hear that the turn of events, led him to hospice, but glad you have the direction and support you need, in this "important next stage" of the "memories to moments" you posted in an earlier thread. As for forgetting Gary, and those vivid memories you have, you will never forget "your Gary," and all the loving memories you shared. You posted earlier about "quietly and lovingly taking control - that moment of control when you knew Hospice was your next step. And in keeping Gary as comfortable as he can be, loving and nurturing him along the way, and by just being there as his anchor of hope, in whatever time God gives you together in your brave journey with this disease. You can see I'm using your caregiving advice this morning, that I keep by my side, in mine/my husband's own brave journey. God be with you both.........Best, Karla
-
Like -
Helpful -
Hug
14 ReactionsI am sorry that Gary's condition has taken another turn. At this point, you might consider hiring the services of a death doula, in addition to hospice. (You can also enroll in a training course to become a death doula, so that you can help others down the road. You would make an excellent doula.)
My George was on hospice for six months. When his condition stabilized, we terminated hospice and transitioned to in-home health care. Hospice was a great experience, and we will probably be looking into it again since George has gotten weaker and is sleeping a lot now.
Love and prayers for you and Gary,
George's Wife
-
Like -
Helpful -
Hug
8 Reactions@georgescraftjr Thank you for this thought. I have read about them but it would not have come to mind.
It is good to hear that you and your husband had a reprieve.
I am ending a day in which Gary was the least mobile that he has been, and a new caregiver who was not expereinced in managing a person who is minimally mobile. The hospice nurse comes to do the evaluation only on Monday. and I sure could use some experts around this weekend. Hopefully the caregiver coming tomorrow will be more prepared.
-
Like -
Helpful -
Hug
7 ReactionsI am so sorry that Gary has progressed to this point in his journey. I am glad that you got the opinion of the gerontologist and that you and Gary will now have the support of a Hospice program. We had Hospice care for both of my parents at the end of their lives. I really appreciated their focus on making the end painless and meaningful for me and my family. They even supported us with grief counseling after they passed. You and your Gary are in my prayers. Sending you hugs and angels.
-
Like -
Helpful -
Hug
6 Reactions@memoriestomoments I am saddened to hear your and Gary are going thru this stage. My hearts aches because I just went through this with my Tom, who passed away in February at 64 yo after hospitalized for the last 5 months of his life and 1 week on hospice before he passed. It was a very hard decision to let him "go" and be taken care of by others because I was the one who was supposed to be doing all of it to the very end. But i finally realized I couldn't. I hoped that I would get my "ole Tom" back but knew that would never happen. Oh yes, there were times of clarity, even if it was short-lived and I was always excited about it AND for him cuz it meant everything was normal again, even if it was only for a minute. We had a great neurologist and with her knowledge and the research i would do on my own, I knew there would be things that I would have to let go and concentrate on other things. Like, not worry so much about him getting exercise. The strength was declining and couldn't do it as much so I didn't push it. I felt these things were not going to improve so I concentrated on things he could still do with not so much struggle. You got great advice from your doctor with being truthful with you how the end was approaching... how his brain was processing things differently as the end was drawing nearer...not much enjoyment left and how hospice was the way to go. I said earlier that "letting him go" was a hard decision, but it was also comforting to know that he would getting the care he REALLY needed now that end was coming because I wouldn't be able to. It enabled me to just enjoy every minute of what we had left and not be the full time, exhausted caregiver that had been taking a toll on me for quite some time. I got to be his wife again by just loving him, remembering all the good times we shared, listening to music and dancing ( ohhhh how he loved his classic 70's) and making new memories, even if they would only be for me 🙂 I would help the hospice workers with him if they needed or wanted but I no longer had to think about getting him into the shower, or getting him dressed or dealing with his sundowning that could last well into the wee hours of the morning. I could take a nap now. And finally just enjoy HIM!! He was no longer my patient but my husband and the love of my life...who i would have walked a thousand miles for, to bring back a cure. As sad as it was, I am so glad that the last few months I had with him are ones that I will always cherish!!! I miss Tom every minute of everyday and will for the rest of my life , but I know we will see each other again and that he's waiting for me.
Strength, Peace, Love and Hugs
-
Like -
Helpful -
Hug
9 Reactions@bayviewgal A beautiful kind post and one where we would all walk together that thousand miles you reference to bring back a cure. I'm sorry, you lost your beloved Tom. May he rest in peace, until you do see him again. Best, Karla
-
Like -
Helpful -
Hug
3 Reactions@memoriestomoments, I appreciate your starting this discussion. I can only imagine that, while dying with dementia is anticipated, discovering yourself in the end stages of caregiving for the end stage of dementia must still feel surprising, shocking and even unexpected.
I have heard many here on Connect say that getting hospice care (home or residential) took on some of the caregiving duties giving back moments to just be the wife/husband, sister,/brother, daughter/son and just be with your loved one.
You might find articles on Virtual Hospice (https://www.virtualhospice.ca/) like this one helpful as this stage progresses:
- Final weeks and days: What to expect https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Final+weeks+and+days_+What+to+expect.aspx
Do you also have a hospice volunteer assigned to you and your husband as well as the medical staff? How are YOU doing?
-
Like -
Helpful -
Hug
1 Reaction