Feels like a series of endings and cannot find a good place anymore

TrumpetSwan

I am sure there are several posts on this, but I feel like there is no end to what seems to be a constant unravelling of my parent's condition straight into the abyss.

For those who are further up the road than me, did your life ever get back to anything resembling "normal"? I feel like a part of me, my enthusiasm and curiosity about life is simply just dead and gone.

The latest episode on this journey came as someone at my parent's ALF called to inform that they called an ambulance to have my dad taken to ER due to finding blood in his briefs. My mom has stage 6 dementia and is very confused, which they mentioned and said they were trying to keep her calm. I went to the hospital to check on my dad. I knew he would be worried about leaving mom alone. He also has signs of dementia and A-Fib and CHF among other conditions. When I saw him, he was still in an exam room in ER and the nurse said he was diagnosed with only a UTI and was approved for release. They were keeping him there while they looked for transportation back to the ALF but I said I would drive him back. We checked out and left.

Upon leaving, I saw my dad did not have his walker or his cell phone. He was holding a handset of a phone in the room, and I think he was trying to call out. He said he had no idea where they took him, but said he did not agree to go to the hospital and he felt forced against his will. A nurse helped him into a wheelchair, and I left with him and helped him into my car. He was struggling to walk since he has fluid retention in his feet due to the CHF. I got him back to the ALF, picked up his walker and got him back to their room. Upon entering, I could hear my mom repetitively asking "Where's my husband…. where's my husband"? Nobody was in the room with her. Someone did put a piece of paper in front of her with a written message "Your Husband Is In the Hospital. He is OK." My mom however was not even looking at it. As we entered the room, she seemed happy to see us and asked where we were. I answered, and then she was on to the next thing, asking for a nearby blanket.

I thought that no matter what my dad's condition, he no longer has the support of a wife looking after him, sitting with him the hospital, etc. Without a child looking in on him, he is alone. My mom is too. Both are at the mercy "of the system".

I used to look for the sacredness of what they are going through. I used to find small graces.

None of my parent's friends ever lived an ALF. Many have died, but they all died while at home with hospice. Somehow, at least from a distant view, their friend's all had a more gracious ending in their life, and it was a shorter duration. Did my parents just get unlucky that both got dementia and both became incontinent, unable to manage at home?

How do you move on with positivity while this situation continues to go on?

jfkoc

I think you move from day to day down a very difficult road. You will use all available resources….time and money and emotions. The road only goes in one direction.

Now is when you evaluate their placement and get Plan B in place.

We are here…please let us know what we can help with.

dancsfo

As sad as the situation may be, and while acknowledging that others who passed away early did so gracefully, I think we will still be saddened if a parent who suffered with dementia passes away and you'll miss them, no matter what. So either path - a short and graceful end, or a long and difficult end, both are part of the human condition that we endure.

We're here to provide support.

harshedbuzz

@TrumpetSwan

I'm sorry you and your parents went through this experience. Of late you have been posting about making a move to a MCF; I think this demonstrates the ways in which even a quality AL that is willing to accommodate PWD can fail them. Leaving a woman with dementia a note to which she can refer when she wonders where her husband has gone is comically tragic. Your parents need dementia-informed care delivered by people who understand the condition.

In terms of endings, the ambiguous loss is unique to dementia. Many of the indignities are identical but they are endured by patients who are fully cognizant of them. I think the difference is that families don't tend to discuss it as broadly whereas with dementia conditions like incontinence are assumed and/or discussed.

To answer your question— will you get back to normal? I did not get back to my old normal after my dad died. I ended up assuming a bigger responsibility for my widowed mom. My new normal is not as carefree as I would have hoped. I am a changed person. I am starting to have concerns about my mom's cognition of late— word finding issues, minor confabulations, short term memory glitches. She's passed the MMSE and been treated for Lyme Disease and I am waiting on a call to schedule further testing sometime this winter. If my fears are confirmed, I too am going to be angry at the universe.

HB

Quilting brings calm

one foot in front of the other. That’s all we can do. I think what you take out of this episode is that your mom cannot stay in ALF with your dad. She needs more care and structure than the ALF is providing and he’s not healthy enough to provide it.

Have you talked to the friends whose parents died at home on hospice? In detail? Because they may not think they had it any better than you. They may have wanted ALF but couldn't afford it. They may be thinking ‘why me’ - why didn’t that other person over there get my deal and me hers? . I’m not minimizing your deal- but you can’t focus on why your parents got stuck with x and someone else didn’t. First, ‘ that way be madness’ as they say. Second- their deal might not look as shiny close up.

Hang on, we are hanging on with you.

kblau

I feel for you. Having lost my dad to cancer (AML) when he was 65, was torture to watch. 3 months of physical deterioration. Now my mom at 72 in stage 6/7. I feel like I’m seeing the opposite side of what death could be like. I think about this a lot and would take my dad’s fate over my moms any day. But I also feel slighted. Most of my friends have both their parents alive. I got married less than a year before my mom was diagnosed. Pregnant during her diagnosis and now i feel like i am parenting 2 toddlers - my 4 year old and my mom.

to answer your question, I was never the same after my dad died. I grew so much from my grief. I adjusted to my new normal. And in the same way, I am adjusting to this new normal. I told myself today that the only way I am going to survive this is by living in the now. What is it like today? Right now? Are things ‘okay’? Can I breathe a little?

TrumpetSwan

Thank you everyone. Your replies are all so insightful. I assume it is insight that only comes through navigating some of the hardest challenges.

Taking one day a time, and will keep hanging on with all of you. Thanks.

Lucy C

It's not unusual to feel your positive emotions deadening under extreme stress. That said, it's not permanent. Life will not be the same after your parents pass, but it doesn't really have to be. We tend to grieve about losing the life we "had," and yet, life itself is a series of changes and restructuring from birth to death. Like a river following a way to the sea, it's always cutting new channels and finding a way past obstacles. Your future life won't be your past life, but as your body and mind (eventually) recover from the effects of long stress and grief, you can develop new interests (or new interest in old interests), and find new rewards and new joys. Fortunately, our brains are "plastic," and they can get a grip on peace and contentment again, once the suffering is subsided. You don't have to be afraid of "who you will be" when this is over. The caterpillar who went into his cocoon is never the same when it opens, but it's not so bad being a butterfly, either.

SDianeL

https://alzconnected.org/discussion/comment/219753#Comment_219753

so beautiful. I needed this today. Thank you.

TrumpetSwan

https://alzconnected.org/discussion/comment/219753#Comment_219753

Gosh, Lucy C. Thank you. The reminder that this is not permanent is good. Also that our brains get a grip on peace and contentment again is reassuring. I agree that life is a series of restructuring. It is easy to move with that when it is something happy. I guess however I lost sight of that in the recent years and have been so focused instead on fixing the conditions I see occurring then reacting to the next thing or new need that arose.

I know this current status is now beyond any effort I can exert to "fix". It puts me in new territory. I am approaching an end to something that is going to be gone forever. You gave me a different way to view it. The river that finds a way to the sea probably describes where I am at mentally right now. Looking for a new way to be in this world. You made me believe I will find it. Thank you.