Selfish post

ghphotog

I know this might sound like I'm only thinking of myself but I really am having a bad day of my own. I've been taking care of her for years, the constant shadowing, racking my brain trying to interpret everything she's telling me and she won't shut up, not for a minute, the never ever ending drama, the crying, the yelling, the door slamming, from sun up to sundown and I'm not exaggerating. I'ts not a UTI just this freaking disease. I know it's not her fault and that's what makes it even harder.

Most days I'm ok and can handle it but there are days like today I feel like it's NEVER going to end. She picks up on my frustrations and that just sets her off even more. Even now she's over my shoulder watching me, she can't see good and has no idea what I'm typing. Today I just feel I can't take it any more. My body is literally falling apart, I can't even wipe my own butt without causing an injury to my rotator cuff that might require surgery. I cancelled the Ortho appt. I'll just work it out. My back hurts, my mind hurts, my leg hurts and my shoulder hurts like hell when I move it certain ways.

IDK, I see no light at the end of this tunnel and I feel it will not end. . . ever.

I've been living in this demented world a long time now and days like today make me seriously think about placement even if it bankrupts me. As George Strait sang in his song "Amarillo by Morning", "I ain't rich but lord I'm free".

Don't get me wrong, I care very very deeply for her and I've always tried to treat her with dignity and respect through all of this.

On top of all of this is my mom whom I placed in MC a while back but I'm still responsible for her in a lot of ways, especially emotionally, and it makes no difference how I feel or how burned out I am sometimes, I still have to care for her as I drag my demented wife along in tow. I have to schedule her dr appts around my wifes and my own, I have to take her to every single one and be there in the exam room so I can hear what the Dr. is saying. She lost here teeth again. Second time in a month I've had to schedule her for denture replacements, making sure her MC bill is paid, dealing the Human Resources to get her Medicaid to kick in. . . . . . . etc and etc. prd. dot.

Thanks for being here and thanks for letting me vent a little.

I keep editing this because as I write more and more keeps flooding my brain.

Jeanne C.

I'm sorry you're having a hard day. It's not selfish to feel that way. You're a great caregiver and doing the best you can. And you're allowed to vent. Can I be nosey and ask if you've looked into Medicaid? I know it varies by state, but I was able to get Medicaid to pay for in home care among other benefits. I so want you to have some help and respite. And if you're in crisis, please please call someone. You're important. Feel free to send me a private message if you want to talk.

terei

I’’m sorry but you are killing yourself. It is hard enough having responsibility for someone in a facility, let alone trying to care for someone 24/7. If you have not seen a CELA to try to work out the finances for placement, do it now. You will not be bankrupted but it will be hard…please start thinking of yourself + your wellbeing. You are as important as she is.

ghphotog

I'll be ok until days like this start piling up on top of each other. Just a bad day emotionally for me as I was irritated all day. I have days like that from time to time.

Buggsroo

I totally get where you are coming from. There were days when an Oppenheimer blast would go off in my head. I honestly wondered if I would ever come through the other end.

my husband is going I to long term care from the hospital. I have seen how improved he is. He smiles, answers simple questions and looks at all the activity around him. I visit once weekly and he is happy and really well cared for.

I can’t take credit for it, however he sure is a lot happier than when he was at home. The key is that the staff are on shifts and can go home, which is something you cannot do. Maybe your sanity is worth it.

KayJ

https://alzconnected.org/discussion/67066/selfish-post

Good night. I signed in at the right time. Today I’m having a bad day. I just feel drained and decided to check the internet for help and can a cross this site.

I’ve been a caretaker for about three year for my mom who has moderate Alzheimers. I can truly relate to your post. Your post tells me though we may be miles apart, we’re not alone. You are not selfish for the way you fel. Hopefully by time you see my response your emotions have gotten lighter. Whoever she is to you she’s very lucky because you sound as a person full of compassionate.

The last couple of days I’ve had a lack of motivationtion, energy and am highly irritated. Experts and friends can offer a lot of advice and tools on how to deal with people with this disease but not enough tools to deal with self. Though most days I don't mind taking care of her but I’m human too. I try and give her space and make her feel alive and useful but at times this can come with challenges. Sometimes I don't even what to try having a conversation with her to eliminate frustration for us both. My mom was a great mother when she had her wits about her but she always had a bullying, mean personality. Though I find that she was never mean to me, I knew she had it in her. Now that she has Alzheimer's disease and I’m her main/only caretaker, her meanness is so prevalent towards me and sometimes I just get exhausted. Recently I was able to take a three-week vacation to help re-energize myself. I went on a Mediterranean cruise and my brother kept her for a month. However, I came back to the same old hustle and bustle I was able to revive myself at least for a few days. I pray that you can do the same.

RickM

All of this we have heard before but here goes one more time:

You need to put your oxygen mask on first.

You can only do the best that you can do.

if you go down who will take care of your spouse?

This disease can take two people down.

ghphotg, I admire your dedication, compassion, and strength.

We know what is going to be the outcome for our loved ones. What will be the outcome for us as caregivers?

To consider the last question is not selfish.

harshedbuzz

I am sorry for the place in which you find yourself. I suspect many of us have felt it-- you just said the silent part out loud as the kids say.

I came across this piece yesterday and it really spoke to me.

From the NYT: Coping with Anger as a Family Caregiver — ALZConnected

HB

Denise1847

I am so sorry and I hope you get relief soon. You deserve a life and peace. Check with her doctor for meds for her anxiety etc. Check with your doctor about an antidepressant. It has really helped me. Meds can do alot to manage both her symptoms and yours. Please vent any time as we are here for you.

Smilescountry

Oh, my! I am so sorry for what all you are going through. It is not easy. You have already received some really good advice. I will say, again, to take care of yourself. Taking care of two people at the same time, even if one is in a facility, is a real challenge. Sounds as if you need some relief. I was advised to make time for myself every day, and, for me, that is teaching just two hours a day. I talked to a gentleman at church Sunday whose wife has Alzheimer’s. He is still caring for her at home, but he is exhausted, as are you. His daughter took her mom home with her for a week just to give her dad a break. The man was feeling a little guilty, but, at the same time, he was thankful to be able to get some rest. My parents sleep in separate rooms so that my mom can get some rest. At first, she felt guilty not doing everything for Dad herself, but she is slowly seeing the benefit of others helping Dad with his night time episodes so that she can rest. I would suggest finding something that works for you. It seems as if you are at a place where decisions need to be made, whatever they are.

Howaboutnow

Thank you for venting,, it makes me feel a little more normal. As taxing days like you describe pile up, over several years, it often feels like another minute is impossible to endure. We are so done. But we can’t be done.

And then we are blessed with the elusive good night’s sleep, or see the sunrise, or get some fresh air for a bit in peace without “our shadow” aka LO, and suddenly we’ve moved past that desperate moment and find strength to stay.

I’m going to pray you get your moments more often, where you can separate from the intensity and get your mind a rest.

LindaLouise

I appreciate your honest feelings - you speak truth for so many of us and the comments here remind me that self care is not a luxury if we are to continue as care givers. I also care for both my 92 year old mother and my husband. My mom does not have dementia, but is very demanding and not happy that her daughter has another responsibility other than her! No compassion for my situation with my DH, whom I can't leave alone, but only how that impacts getting her needs met. I've finally pushed my brothers to take a more active role with my mom - and the relief I felt when one of them took her to her doctor appointment was stunning. Prayers for you and all of us in this challenging situation - appreciate the encouragement in some of the comments that we do find strength to stay...

Kibbee

Your post resonated with me, and if venting helps bring relief, then come here and do it. It’s a sympathetic audience, since we are all living in Caregiver Land, dealing with many challenges and doing the best we can.

I find I am coping and doing OK in my caregiver world until suddenly, I am not. Sometimes it’s something DH does, but sometimes it’s just running out of “go” due to the unending grind of being constantly on duty. This is magnified by the feeling there is no known end in sight. It can really sap your energy and patience.

I hope you will be able to find a way to give yourself a break. I’ve always been a budget-minded and frugal person, but I have had to come to terms with spending money on caregivers so that I can get away from time to time. I recently did a weekend trip with friends and spent more on caregivers than I did on hotel, meals, and transportation combined. For me that brings on a certain amount of budget anxiety, but I know time away is necessary to provide some balance and happiness in my life. I have to stay healthy -physically, mentally and emotionally - in order to continue to be a good caregiver. I hope you will find a way to give yourself a break, both in actual time away from caregiving, but also in acknowledging that you need and deserve to be healthy and happy too.

Anna2022

I'm so sorry that it was a bad day. I've had them; I think we all have had them.

Awhile ago, my anger was fierce and starting to come out sideways and I didn't want to take it out on my DH, so I started therapy. I found a therapist who works with caregivers and who gets it. I say things to her that I can't say to others. It's been a life-saver. If you aren't already accessing therapy, I would suggest you might work on finding a therapist? It's worth every penny I pay, with the help of insurance! Most therapists work by/have telehealth sessions so you don't have to leave the house.

I know you know this already but it bears repeating: I was told early on that the dementias will kill me alongside my DH if I don't take care of myself. I second the ideas of reviewing medication or considering placement. You deserve a life and she may benefit from the care they provide. There are many options out there at all price points.

In the final analysis, you know what's best for your family and you get to make the decisions. From what I've read about your journey, you care deeply about your DW and family and have worked hard to take care of them all.

jfkoc

I too understand. I too thought "runaway" would be the solution however because of who we are we are not going to do that.

Is it possible to keep your wife busy? If so we can share ideas.

jUDITH

Jeff86

GH, yours is so much not a selfish post. A vent, sure, and this is a safe place for it. Two points: one, your plate is beyond full, with two LOs to care for and each of them challenging. It’s no wonder you feel overwhelmed, often. We all do, at least at times. But if those feelings persist, then we have to take some action, whether it’s medication, placement, or something else. Second, it’s generous of you to share your experience—it validates what many of us are going through. So, thanks for your post, and I hope things settle down for you.

toolbeltexpert

Ghphotog your lo's are lucky they have you. My days of the 24/7 stuff you talk about are over.The cna's get to go home from what they do but you don't!

You got a lot of advice about taking care of you. That is NOT selfish. And as you know having placed one doesn't mean your free and clear. Your doing super human work. My prayers continue for all of us.

Stewart

Mimi50

It is perfectly normal to feel this way. My husband is not as far along. As your wife is. My mom’s health is good. She will be 77 next month. Lives by herself. My Dad will be 81 in February. My stepmom is caring for him. They live in Texas. He so far is resisting any tests at all. When my husband was diagnosed year ago. The doctor was surprised she said that most people are not diagnosed. Until much later into the dementia stages. You are stressed and worried. Which is normal and understandable.

avieDa921)

I’m stressed most days, especially when my DA (ALZ 6 years) hallucinates now everyday starting around 2:00 pm where I am not his wife. Follows me around the house, wanting to know what I’m doing & offering to help. Sometimes says you don’t have to do that, you’re doing too much! Ok, so I’m thinking if it was me would he be saying this! I also have to worry if he will make me leave the house because his wife or mother may not like it! This goes on maybe until bedtime! This has been going on for about a month and I said to myself I can’t & won’t do this every night! I love this man of 55 years & I don’t mind his repeat questions or asking about family members everyday, It’s all the drama that comes with him not remembering me for so many hours! With the help of our doctor he is now on Seroquel, just trying to get the right dosage! You know what, we’re entitled to have “bad days.”

GiGi1963

If it is any consolation I am living the same scenario. My husband doesn't think I'm his wife. That he has ever been married and follows me like a shadow wanting to help. We've been married 60 years and you would think he knows me, my name, etc. Went through bedtime and his not wanting to sleep with me because he is faithful. That has not happened in awhile and the sundowning does not last as long lately. Small progress