I need a safe space for me

SPin-need · May 6

please allow me to vent…

I am so tired. My head constantly aches. I don’t sleep well. My DH has AZ and, I am beginning to think, another form of dementia as well. We see doc in two weeks to discuss. He is all over the place some days. Some days hallucinating. Some days body temp out of control. Then he sits down and reads a book. And remembers it. The next day he can’t remember how to answer the phone. I can do nothing without constant commentary and criticism. I can plan nothing. I can’t take a walk even as he has to go with me and he has balance issues and needs a cane. We might get ten minutes before he’s done walking at a snail’s pace.

This is not the man I love most of the day. My DH was the sweetest, kindest person I have ever known. The damn disease is changing that.

I pray. I deep breathe. I take some light meds. I grind my teeth. I am on the verge of tears too often. I was shaking tonight and flipped a frozen pizza upside down in the oven, splattering cheese and toppings all over the hot oven. He was angry that I had to open windows to get out the smell. I want to go to bed and deal with it tomorrow but DH is insistent that he will clean it tonight if I don’t. How? He can’t bend without falling but I know he will do it regardless so I have to if I want to prevent an accident.

If one more person says to take better care of myself, I will scream. I am trying but if you aren’t in this situation you cannot understand how hard that is. This forum is the only place where I know there are people who will understand. I have to get better so I can take care of him but sometimes I just want to let it all take me and release me.

There are moments of joy. I love him so very much but I feel that I am dying in the bottom of a well.

Thank you for listening. I just needed to vent. And clean the oven.

Timmyd · May 6

Thank you for sharing. In some strange way, it is comforting to know I am not alone in my struggles. Your part about take care of yourself really hit home with me. Like I can just book a spa day, or go for a hike. Or a few free hours a week of "respite" somehow makes this all normal and tolerable?

I know an important part of good mental health is having something to look forward to. What does it mean for your mental health when everything you look forward to involves getting away from your spouse with dementia?

SDianeL · May 6

yes we know how you feel. This disease sucks!! Hugs. 💜

Jgirl57 · May 6

Hope you feel better , venting is good.

trottingalong · May 6

my days aren’t quite as bad, but I understand to some degree. We live in a very small community far from any major city. It’s just me. Hard to destress when everything falls on you. Sometimes I’m so tired but my husband gets something in his mind that needs to be done now. That means me doing it NOW because he can’t. Taking better care of ourselves is not as easy for some of us as it may be for others in different situations. I hope you get some helpful information at the upcoming appt.

Russinator · May 6

I know how you feel. (((HUGS)))

wose · May 6

Same Same…everyday. I’ve had so many near misses trying to multitask…I’ve dropped the ball so many times even the minors would turn me away. It breaks my heart when he says “I just want to help.” This disease just steals everything…….yes even my dental health. The dentists asked me if I’m chewing on rocks. I’m so sorry for you and hope somehow for some peaceful moments for you today.💕💜

jehjeh · May 6

Venting is good. I've done it here a time or two (maybe more). People don't get it unless they've lived it. Glad you found this site.

boxinggirl76 · May 7

I know how you feel. I do go to coffee once a week with friends and they keep urging me to get some respite. I kow they mean well but we live in a semi-rural area so it's not easy. One of these friends is now going to come in twice a week and just be present for him so I can resume my boxing workouts. Yesterday I went for the first time in 9 months and it felt so good. Punching that heavy bag was very cathartic. But when I got home and my husband got up, he was really crabby and uncooperative all day. I don't know if there was a correlation since he stayed in bed and slept the whole time I was gone ( less than 2 hours). I'm hoping it was just a coincidence and I can continue this. I hope venting has helped you. Sometimes it's all we can do.

jfkoc · May 7

Hi Spin…

I suggest that you do two things before the appointment

Google diagnosis of Alzheimers. It will ultimately be your responsibility to see that the steps are taken.
Google Lewy Body Dementia. Your post makes me think that may be a possibility.

Dio · May 7

I feel your pain. I was there, too. DH was literally out of control. Just when I thought all is lost, a dear friend took DH with him on a short trip (was nearly disastrous but survived it nonetheless) which gave me a week's reprieve. I needed it so much. Sadly, the taste of "freedom" from 24/7 caregiving was too tantalizing. I got greedy and wanted more of this freed time to which I had trouble adjusting back to being a caregiver. There was no light at the end of the tunnel. As the disease progressed and symptoms and behavior got worse, this dear friend took DH for 2 more separate weeks. But DH was too belligerent during the last stay and I knew I couldn't let his friend further bear this burden. Anyhow, 3 years later we are dealing with a new normal that is causing me much stress. Still, I'm grateful for the current calm. Anyhow, I have no words of wisdom to impart. Just that we understand and we've gone through it too. Come here to vent all you need.

Doingitalone · May 8

It's a sad existence! Sometimes, I dream of packing my bags and disappearing. I don't like to talk to my friends anymore about what's going on because they look at me like I'm making stuff up. So I've learned to live in this hell of a life and do the best I can. I've learned to not have an opinion and just be the "yes dear" wife. I've almost accepted that our life as we knew it, is over. My only peace is a few hours alone at night if I can get him to go to bed early. He didn't ask for this, but neither did I.

Traveler18 · May 8

Yep, been there. I love the push to do the chore now or he will - when you are exhausted and you know that he will make a bigger mess. I have absolutely been there and ran myself to the ground. I did get respite help - hired and friends as possible (limited hours but every little bit helps).

For those who give the "make sure you take care of yourself," be ready with a response. "I would LOVE to do that but I really need some people to step up and help me in this situation to do that." (Maybe not quite that straight forward but you get the point.) Have some specific ideas in mind (I know, at this point you are likely so tired you don't even know what you need!). Ideas: someone to stop by for an hour each week to talk with him or walk with him or look things in his workshop with him or whatever, someone who can run two loads of laundry for me, one meal each week delivered, etc. They will either step up and be part of the support system or that will shut them up. 🫢

I need a safe space for me

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