From Maybe to Reality

Maru · February 18

This past week, I poured out my feelings of guilt about being impatient with my DH to our pastor. Ignore any lack of compassion for the caretaker here, I wasn't looking for that. The entireity (sp?) of his response was who was treating him, was it a local doctor and how I needed to take him into the nearest large city to certain brain clinic where they do really great work and here is the name and the freeway that it is right by it. A five minute talk on the merits of said clinic…none of this was his personal experience.

This was all just so much guilt laid on the guilt that I already have about not doing more, not being the compassionate caretaker 24 hour a day even when I am running on 3 hours of sleep, worrying about is DH taking the wrong meds if he gets up before I have time to set them out for him, when will be the appropriate time to put in a DNR (not yet), who will take care of DH if I become too ill to take care of him, am I not considering all the things that we (I) could be doing to help DH stay busy because i am too lazy to make that trip into the city to learn behavior modifications that I can help DH with and so on and so on. The mind reels with the amount of guilt I can gin up for myself.

I know that I am not the only one who has had this experience. I thanked him for his advice, but now I am stuck with more guilt, plus being upset at the pastor because my needs weren't met. Sorry for unloading, but there doesn't seem to be any other safe place.

Jazzma · February 18

Maru, this is a safe place. It's disappointing that your pastor does not have compassion for your situation — there are some people, religious or not, who simply don't comprehend what caring for someone with dementia entails.

Have you considered locking his medications up? I keep my husband's upstairs, behind a safety gate. He can't get to them unless I give them to him. I had dementia locks installed on all the doors and double-key locks on french doors. Again, he can't get out of the house unless I unlock the door. Knives are put away also. Things that just ease my anxiety about what might happen when I'm not looking.

I wish I had an answer for the guilt. We all feel it, I think. It's an impossible situation. I want to make my husband well again, and that won't ever happen. Short of that, I want him to be happy and relaxed and that's not realistic either. Please give yourself as much grace as you can, and accept any help that's offered. Sending you hugs.

Palmetto Peg · February 18

I'm so sorry that you didn't get a more compassionate reply. One of the reasons this forum is so valuable is that we are all in the trenches with you, and understand totally what you are going through. Guilt has no place in caregiving! Before I placed my DH in memory care, his meds were kept locked and I gave them to him. He was totally unable to take the right things at the right time. After he got up in the middle of the night and I found him "hunting rats" with a very sharp kitchen knife, all the knives disappeared. When he started leaving the apartment in the middle of the night, I placed him in memory care. I went for several months with only a few hours of sleep a night, and just couldn't manage any longer. He was also verbally aggressive and just so difficult in every way. I know everyone can't afford MC, but it in mind and check with an estate attorney about ways you can qualify for help. Come here - we are the shoulder to cry on and will always support you and try to help!!!! (((HUGS)))

v3 · February 18

Sounds like the pastor heard you say " my husband has a brain issue" and he offered an unresearched fix-it "solution" for that RATHER then hearing you saying " I- ME- am struggling with the demands of caring for my husband in this long trek- help me ."

Who knows what his personal mindset is— painful dementia experience in his family so he punts away to the hospital? wanting to provide a solution to an unasked request? Time constraints?

You've got here to vent and maybe try the Alz Assoc social workers? I've read they call you back and have been very helpful. They will get the feelings.

Maybe next time you see the Pastor, shake his hand, look him in his eyes with a warm smile and slowly thoughtfully say " how are you doing?" They say treat others as you wish you'd been treated…..

CindyBum · February 18

How frustrating and so unhelpful.

Here's what I say about the guilt of being occasionally impatient. The advice we are given and what we try to do is to be positive all the time, take all the blame, do all the cooking and cleaning, pretend to be partners still when we're not anymore, figure out within seconds the right fib to to tell our LO in a variety of situatons, get our LO social engagement, take respite whenever you need it, get the outside help, etc.

We are all merely human and there's no one alive that can do all of that perfectly all of the time. Please allow yourself to be human. Take a moment to feel the guilt, then give yourself a break, tell yourself you'll do better next time and let it go.

xoxo

jehjeh · February 18

I'm sorry your pastor was not helpful. That's very disappointing.

My doctor referred me to a psychologist she works with and just having someone listen to me, about me, not my husband or his disease, was extremely helpful. My insurance covers a limited number of visits. I'm also fortunate to have friends who do the same.

This site is wonderful but sometimes you need time with an individual to share all that you need to share. I encourage you to keep looking for that person. Here, we have some counseling services run by religious organizations but open to all. Fees are based on ability to pay.

I hope you find the help you need.

jehjeh

Biggles · February 20

I’ve met so many people, professional and others, on this horrible journey, that know absolutely nothing about this non-recoverable disease. People who think their opinion is the right way, the fix-it way and what you should do. They know nothing about being in the drivers seat having to do absolutely everything, not even my friends know what “doing everything “ means. Know that you are doing everything plus more and you are not alone, never let anyone make you feel guilty. Also with his meds have you tried putting his meds in a lock-up and putting mints or small sweets in one of his old meds boxes.
Surround yourself with supportive positive people if you can, none of us in this situation needs criticism, our needs get ignored, perhaps do a little asking to find a different Paster, there will be someone out there just for you. Take care.

Carl46 · February 20

I agree with locking up the meds. My wife is apt to take mine instead of hers if I don't control it.

Also, I think if you are trying to get by on three hours sleep, it isn't if your health fails, it is when your health fails. You don't need guilt. You deserve a medal for the great job you are doing, and you need help, for your sake and for his.

TXGram · February 20

Mary, my heart is with you. I think we all feel guilt because this is a disease that can be so unpredictable and we are the lone person to try and fix it. It’s hard to just know that we can’t fix it all. I’ve finally learned who I can vent to. There are some very wonderful people who just list off things I should do that really are so unrealistic. I’m learning, these are not the people to vent to. This is a great site. We’re all in this together. The neurologist is referring me to a social worker who will try to find me a local support group. I hope there is one. Hugs to you!

Stan2 · February 20

Mary,

Jazzma said some people don't understand what is involved with caring for a pwd.

I would say that anybody who hasn't done it cannot comprehend what is involved . I would include many professionals who provide "expertise". Many well meaning individuals offer suggestions based on what they believe but in reality they don't know what they don't know. Each of our situations is different , each is unique and each of us must find our own way. There is no room for guilt. If you believe you have made a mistake learn from it and move on. Do the best you can with what you have to work with and pat yourself on the back once in a while.

Last night my DW said to me " I had a good day today, thank you for taking such good care of me". Today may be different but we take what we can get.

tfnots · February 20

I'm new to this caregiving of a spouse world.. I appreciate all your willingness to share. Patience, I think, will help me the most. Don't have it though.

Stan2 · February 20

https://alzconnected.org/discussion/comment/236786#Comment_236786

I saw this quote that applies to me : "When they were passing out patience I left. It was taking too long."

But I'm learning.

jehjeh · February 20

Thank you for the laugh. I needed that! :)

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