can't face it today

M1

I am so glad I can now visit my partner in MC, even though she is declining in front of my eyes. Her conversations make less and less sense. She won't socialize and rarely eats with the group, preferring to stay in her room, where she packs up her things or moves them around, over and over. She won't leave pictures on the walls, or photos of family and friends on the bulletin board. She loves Heath Bar cookies from Publix, but I am going to have to dole them out more carefully-I took her a baker's dozen on Saturday, and they were completely gone on Sunday, so she's not aware of what she's eating like she used to be. She fell Saturday night, no harm done--but that's about the fifth or sixth time she's fallen since the spring, and it's probably a matter of time before she does hurt herself. She won't shower without cueing and doesn't brush her teeth, but can still get her clothes on and is not incontinent yet. We usually sit and draw at a little table in front of her window--or rather, I draw and she futzes, though occasionally I can get her to focus on something, and her artist's eye for color and shape are still there (I don't have them, and there are some things you just can't teach). Sometimes we take little short walks, to get a snack, look at the birds, visit the cat (though he's rarely in evidence). Since she's more comfortable with me there, I try to get her in the shower at least once a week.

I am frequently there on both weekend days, work two days a week, and try to go at least once during the week. Feel guilty when I don't because she isolates so much and I know how much my company means to her. Today I was on my way in, and just couldn't stomach it. Literally turned the car around and came back home. I know there are those of you who will understand. I miss her so much, but I just couldn't face another day of the same questions, the same conversations, the same fiblets about why she can't come home. Yet when I'm here at home, it's too quiet, too lonely, and my motivation for doing most things is still so darn low. Feel like I'm punishing myself either way. Let it go, right? So much easier said than done. I wish more and more that death would take her and spare her more indignity.

Quilting brings calm

M1- I totally understand the turning around and going home. My mom called Thursday afternoon and wanted me to take my step-dad to a last minute eye appointment Friday. I said I couldn’t - that I was busy- - I didn’t tell her I had a rush thyroid ultrasound scheduled for the same time. The AL transport took him instead.

I had decided to go to his appointment unannounced if I got done with mine in time. I did get done, but I couldn’t bring myself to go to his appointment - although I made it as far as the parking lot of the building. So I do totally get that we just aren’t equipped some days to deal with the emotional stress.

Try again later. You might get through it then. You are doing the best you can - and it seems to me that you are doing a great job.

ThisLife

M1, I'm sure everyone on here gets it. We all have those days whether our LO is placed or still at home. I'm so sorry your journey is so difficult. The changes are so heart breaking. You are doing the best you can. Sending you a hug.

Jgirl57

I am glad to hear that you went home. That is being honest with yourself that you needed the break .

Jeff86

M1, sometimes there’s nothing left in the tank…you’re running on empty. This caregiving thing, whether it’s at home or in a MCF, is so relentless. And being an up close witness to the decline and withdrawal of the most important person in your life is heart-breaking and exhausting.

It’s more than okay to take a break sometimes and say, for now, no mas.

ButterflyWings

Let it be, let it go...Definitely easier said than done. Oh M1, I am so so sorry for all that you have had to shoulder and endure as this spouse/partner caregiver life is unbelievably challenging any way you look at it (we know). I can't imagine handling the responsibilities you have at home and also coordinating everything for her so well, for so long, while waiting for the day that you could visit also.

Now you can visit, but the commute and sheer soul crushing reality of ultimately what we all are struggling with really: we miss "them" so much, but it is the former "them" that we really are missing. Not the version of our LO that is here and now. And d*mn dementia erases more every day. I feel like I live with my DH's stunt double. And am doing my best by this guy because that's what I have to do right now to live with myself. I love him because he looks so much like my husband, though this person really is not my hubby at all. But he deserves to be treated with compassion and care, and for us there is no one else to do that. If there were, and I could afford it, I would get him the best care around and try to move on with my life. My real husband would have wanted that, I am 1000% certain.

In a way, this is exactly what you have been able to arrange for your lady love, although I well recall how gut-wrenching so much of this journey has been for you. And the very real danger you were in as her dementia ramped up. I was just thinking, where would she have been without such a fierce advocate and also selfless love who put your own pain aside, to ensure her safety and comfort? We are really the only thing standing between our LOs and certain disaster. On top of the disaster that dementia itself, is.

You did the right thing to turn around today. I think you chose you at the moment, which is very important. And you took nothing from your partner by doing that. I know from my own situation, the loved one I am looking for is no longer here. So, I must begin the work of separating myself somehow, from someone who is already gone. I must learn to live in the present and not the past. How ironic that my DH is several steps ahead of me in living "in the moment". I know we can honor the memories while accepting the reality of what is. This is ambiguous loss and grief for me. Sorry for the ramble. I feel you, is all I am saying.

(((Big hugs))). You are one of my true heroes.

toolbeltexpert

M1 I am sorry and I get it on every count, I dole out the candy or she eats it all, dw has fallen 3 times this year nothing broken yet, dw wants to take the animated cats home every day, guilt for not being there. The big decline in walking and language they now transport her in a wheel chair. I have finally taken that trip, I am still in NH, I am leaving in the morning for my meal in Plymouth tomorrow. My body has actually changed in the last week, it's returning to what it was before before dw left home a year ago, I haven't had the stress and the guilt although I have called the mc, but not talked to dw. She's is crying in the morning which she was doing while I was visiting . This is the first time I have not been there in the last year. By this Friday I will be back in Tennessee Lord willing and It will be back to the groundhog day. It will be interesting if my body reverts back not working like it used to.

M1 I get being home alone, it is really the worst.

I almost turned back home as I was starting my trip, it was so hard to leave but I had to do it for me.

I am so sorry because I know what you are going thru. You are not alone in wishing for a dignified ending but it seems Alzheimers doesn't spare anything.

Be kind to yourself, don't let guilt give you any grief, you have nothing to feel guilty about, yes easier said than done.

Stewart

M1

You all again give me such comfort. Friends.... I never knew an online connection could be this important, but it is. Jeff i hope you are well, i think of you often. qBC, i hope you and your husband are coping. Stewart, i am glad its been a good trip, blow a kiss to the Cape for me. This life and jgirl, thank you. BW, stay strong my friend, im still celebrating your return after such worry.

Quilting brings calm

@M1 we are coping using the same methods used by everyone here for their own situation. You get up, put one foot in front of the other if you can. Some days are better than others. Some days, like you, I have to turn around and go home. Cemetery days are bad. We have a potted flower there and we have to water it every few days.

My parents aren’t declining like your wife and TBE’s. They seem in a holding pattern.

Elshack

M1 I can so relate to your post! Yesterday I just couldn't bring myself to visit and I stayed in bed most of the day doing crossword puzzles and eating a chocolate bar! My DH is only a stone's throw away in the MC bldg down the hill from my apartment. He still knows who I am but doesn't talk and is on pureed food. I sit with him at his dinner time and afterward I watch him when he works some wooden puzzles in the living room. I play music on my IPhone and I don't even think he can hear it. He has fallen 2 times within a week and it is always in the early a.m. but they know not to call me at 1:30 am since there is nothing I can do. He is on hospice. He tirned 93 in June and it will be a year mid August that he has been in MC. I am hoping my finances can handle any extended stay. When I visit him I only stay an hr or so and truthfully that is all I can handle.

I am 83 and have fibromyalgia and chronic fatigue syndrome. I eat lunch with others in the dining room in independent living and try to play cards a couple of times a week. You have always been so supportive replying to my posts in the past. Kudos to you for being such a a loving caretaker and companion to your lady love. Most days I pray this journey will be over and still I get teary eyed knowing I would never see my DH's sweet face and smile again. I hate this disease.

Dio

M1, I get what you're going through, totally get it. I feel the wrath of this evil disease, not just what it has done to the PWD but to all those near and dear. I finally visited DH today after 3 months having placed him. I dreaded it but knew it was needed and braved it. And it's warriors like you who inspire me and instill in me the strength. It's more than okay to be true to your feelings and your needs. Take care and be kind to yourself, always. And I'm not afraid to say I wish for a speedy end to DH's suffering. Death will be such a welcomed relief.

Joydean

M1 I completely understand how you feel. My dh is still home with me and there are days I wish I could just run away and keep going and never come back home. Watching him disappear in front of me day after day is wearing me down. Some days I wish this nightmare would just end. This disease is destroying us all!

M1

Got a call late last night that she had fallen again. Going in this afternoon, regardless. We seem to be on a sharp downward slope right now.

Jeanne C.

M1, sending you virtual support and hugs. We're early in our journey, but I definitely have days where I feel like I "just can't." You are a warrior in this fight and have done so much for your partner not to mention all of us on this forum. Be kind to yourself.

Joe C.

M1, I totally get it. I live about 40-45 minutes from DW”s MC and there have been a few days I started out for a visit and turned the car around. Usually I just say to myself I’m not up for the drive today but maybe I just can’t take it that particular day.

Ed1937

M1, I can understand every single thing you said, and I'm sorry things aren't different. There comes a time when hoping for a quick end is not a bad thing.

When it doesn't matter how hard you try, you just can't make things better in any way. Those are the times it really gets to you. You are caught deciding whether or not to visit. You always care, but there are times you wish you just didn't care at all. It is all understandable, and I'm so sorry. This disease is crushing.

mommafour

M1, your experience is so relatable. My DH is still at home, but I get that feeling when going to visit my mother in her long-term care facility. I try to visit every weekend but sometimes I end up skipping a week-end because I "just can't". You're taking such great care of your partner and sometimes its just necessary to take a break for yourself. DH is likely not far off from the next step of a memory care facility and I'm learning so much from you and others about that experience. I'm sitting here at work now, dreading the end of the day because I never know which mood he will have when I get home. Sad to say, going to work is my temporary escape.

toolbeltexpert

M1 I got a side order of clam strips after eating a whole plate. Joe C and I thought of you and really many others as we chatted,it was good to meet someone face to face. Sorry to hear about your dw's fall and it does sound like a downward trend. Praying for you always.

Stewart