Feel so guilty

Paris20

I visit my husband 2-3 hours every day but it’s becoming difficult for me to keep it up. DH is at early stage 6 Alzheimer’s but had a paralyzing stroke so now he is in the best (i.e., most expensive) facility in town. When I visit him, I face two hours of whining and toilet aromas. He is doubly incontinent now and is unaware of it so when I come into his room I am often hit with poop odor. I call the aides and they come immediately to clean him up but they cannot check on him every few moments to see if he had another accident. They wash him and dress him each morning and check him before all meals and before putting him to bed. He cannot call them himself because he cannot figure out how to press a call button. Once he soils, his room stinks for a long time. Windows don’t open so I now bring perfume to spray around.

With all this as background, I am feeling painfully guilty if I skip a day, which I have done twice. One of those days is today. Both times I had contractors come for various home repairs and used them as excuses for my absence, not that my husband remembers anyway. The guilt is agonizing but perhaps not as agonizing as spending day after stinky day visiting my poor husband. Help me put this in perspective.

M1

I surely understand how you feel.  I am so sorry.  The hard truth is, your presence probably doesn't make a difference.  I guess it's good if he's aware of your presence while you're there, but it's very hard to know.  You are doing all you can do, and yes, it's okay to skip days.  That's all I can say.  Prayers for both of you, that he could be released from this suffering.

French

Paris, 

I am not sure it will help you, but imagine that I only visited my partner every 2 months and that I will increase the time between 2 visits to every 3 months. Yes, it is far, but I could go more often as most of the other wives are doing.

I won’t because it is complicated (because of my work and of my children), tiring and destroying me. 

I know that my case is the other extreme. He would be near me, I don’t think I would go everyday either.

You already gives a lot, You also have to think to yourself. You will still be there if he needs you, and that is what really matters.

Ed1937

Paris, guilt serves no good purpose. The only thing it does is make it harder for you. You really have to get over that, either here or through counseling. There is no way to know how much your husband can pick up on, but when you visit while feeling guilt, if he can pick up on anything, he will likely pick up on that. Give yourself some off days. Not only is that okay, but it is needed. I'm sorry it's so hard.

Fairyland

Could you visit at mealtime or even join for a meal, so he has just been checked for hygiene, and is distracted by food?

Beachfan

Dear Paris,

Although I empathize with your plight, I am in full agreement with M1.  No one can say for sure how much of a difference your presence or absence makes to your DH at this stage.  You need to let go of the guilt and think of yourself.  You have obviously planned long and hard to provide DH the best care possible; take advantage of it and find some peace for yourself.  I visit DH once a week.  He has no knowledge of my presence, arrival, or leave taking.  I help him with lunch, chat with the staff and other residents, and resume my life sans any guilt.  At the moment, I am preparing to join two granddaughters on the beach; DH is 200 miles away, I will visit him next week.  Nothing will change.  If the situation were reversed, I fully expect that he would be preparing for a golf outing or a baseball game, guilt free.  Life goes on, just not as we would wish it to be.  Stay strong. 

ButterflyWings

(((Paris))).  Hugs! You must be in shock to begin with, given all the events and suddenness. So, I agree with the others that you must take time away and prioritize yourself. I addition to all that the others said, if you really want to check in a couple of times a week, I think I would limit my visit to 1 hour if you could do that? 

I can hear that being in the space is torture for you in ways that it is not, for your DH. He can't smell it and can't remember it, so it sounds crazy but...no harm done if he is not having skin breakdown or infections. So please don't put yourself through that. Nothing to feel guilty about.

And definitely see what French has shared, for perspective. Your DH will be none the worse for wear if you put yourself first just for a while and maybe visit 1x weekly for a short time. I know you miss your DH and we so want to do our best for them. But I remember in my early days on these boards, someone posted a point that really stuck with me. They said when we become active DPOA and primary caregiver for our PWD LOs we are following their direction to literally "step into their shoes and take on their responsibilities", which includes taking good care of their spouse (us).

So, I totally understand how you feel. It is almost like survivor's remorse for me, and DH is still at home.  Yet it is not sustainable, fair, or wise to keep placing myself so far behind all the urgencies of dementia that I lose myself entirely. Especially since it means I will be starting from scratch trying to find myself when the inevitable comes and DH leaves this world due to complications of this dread disease. You have done so much for your LO. Please take care of you too and don't feel guilty about that. 

A. Marie

Paris, I'm just adding my two cents to what the other commenters have wisely said.

I placed my DH in a skilled-nursing facility just over a year ago. He wasn't sure who I was even then, and he definitely doesn't know me now, except *occasionally* as a familiar voice and touch. I visit twice a week for 45-60 minutes each time, mainly just to feed him a cut-up apple (which he still can enjoy), check in with the staff, and assess his wardrobe and the condition of his room. Please don't feel guilty for giving yourself considerably more leeway than you've been doing. You have gone above and beyond the call of duty.

toolbeltexpert

Paris20 you should not feel guilty. You didn't give your husband altzhiemers, but you care for him, you are doing good. Don't let the devil steal your joy. You need to take care of you as well along with all the other responsibilities, your bearing a big burden. We all fight this battle, doing the best we can, hoping for some measure of comfort. We have to accept that we are doing the best we can and let it go. My prayers continue for you.

Paris20

Thank you all for replying. I truly need your guidance. It’s impossible to go through this difficult journey alone. I’ve been doing a lot of self-talk since I posted and I know that visiting every day for 2-3 hours is a self-imposed rule that has only been making me feel rotten. When I visited my husband yesterday, he had no memory of whether I had been there the day before or for how long. No surprise there. Today my daughter is driving for hours to celebrate Father’s Day. I know that will please my husband but once she leaves, any memory of that joyful day will be gone.

Ed1937

I'm sorry those good memories don't last. We just have to live with it, even though we don't want to.