Don't want to go visit

M1

Harshedbuzz mentioned in another post this morning that her dad was reluctant to accept help from anyone but her mom, and was insulted to think that she needed a break from him. That's exactly the position that I find myself in, and after delivering her back to MC from the hospital on Monday afternoon, all I wanted was a break. On some level I think she liked that hospital because she had me back with her for at least twelve hours a day. When I took her back to MC, she wasn't glad to see a familiar place and familiar faces, she was just said because she knew I would be leaving.

Unfortunately there's no other family but me, and no other friends that can step in. Even though I didn't go in yesterday, there were four phone calls yesterday because she was refusing care and locking the sitter (a safety precaution since she'd just been discharged) out of her room. She hasn't had a bath in two weeks, won't take one unless I'm there. Won't come out of her room for a meal, won't participate in any activities (though that's understandable right now, having just gotten of the hospital).

I guess I'm just having a pity party, I'm sick of this. My first thought when i think about visiting is that I don't want to go back. My friends and family are all concerned that she's going to take me down with her. But I can't get rid of the sense of obligation to meet her needs, no matter how outrageous they are. It's so frustrating that she shoots herself in the foot and makes everything worse by being so obstinate.

We are due for a care plan meeting, which I am trying to reschedule. Being childish in my own desires, I just wish I could not be responsible for a week or so, not hear a word. I wish I could sleep in, work in the garden as my back allows, go see my grandkids, go to lunch with friends, try to catch up on long-term planning. But we all know that won't happen, and I just need to pick up and soldier on.

Vent over.

charley0419

I’m no where near where you are at but I can see it coming. It’s a yr since DW diagnosed as mild dementia but see short term lose and confused a lot Dr said no driving. It sucks !!

loveskitties

M1, is there some middle ground that you can live with?

For every hour you spend with your loved one to make sure she is safe and secure, give yourself an hour for yourself to do those things you mention?

Our deepest frustrations come from those things we can't control, no matter how hard we try. Remind yourself that your worrying and exhaustion will not change things in her world.

With such a long time in another environment, it is like starting over at the MC facility for her.

I am surprised that there is a lock on her door which she can engage. That could be a safety issue even though staff may have a key.

While I know you want to have oversight of her care, you can't meet all her expressed needs ...you can only make sure she is safe and secure.

Please give yourself some respite.

Quilting brings calm

M1- go over, get her the bath. Check on the bare minimum you have to check on. Ask the facility to prop the door open with something that’s too heavy for her to move. Then LEAVE. She can get by for a week without a bath after that. She can get by without seeing you for longer than that - she proved that at the old MC. This is a readjustment period all over again.

Tell the MC you will be busy for a few days. Let the calls go to voicemail. You can listen and call back if it’s something you really need to handle. Skipping a meal isn’t something you need to handle. She’s safe there even if she isn’t engaging. She will eat when she is hungry( just like a toddler).

Go visit the grandkids (even if they are out of state and you have to travel). Go get that lunch or that cup of coffee. Go do that activity.

midge333

M1, you are not being childish in your desires. Your situation sucks and you sound exhausted. Your wife's hospital stay has exhausted you. Try to take some time for yourself.

Mint

Have a lot of these same feelings and very similar situations. Don’t have all the answers though, wish I did. My mom tried to lock me out of the house the other day. Have told people in the past that I wish I could find a book with a set of instructions for this.

Do know though that we have to take care of ourselves also or we know what’s going to happen to us. Yes being human that’s what makes this awfully difficult for us.

jfkoc

MI....I so understand.

Your partner is going to be unhappy w/o you there. Only you can resolve you feeling the cause of that unhappiness.

I hope you can because truth be told, she will be OK.

Please go be with those grandchildren!

Joydean

Go see your grandkids! Please for your sake and theirs. How many times have we heard on this forum “No guilt “ , it’s easy to say but harder to do. But we are all human and our emotions get in the way for self care. That’s why dementia takes 2 instead of one.

My dh is still at home and there are days I just want to sleep, I don’t want to be his caregiver, I want to get in my car and drive as far away as I can. Then I feel guilty! But my feelings don’t really change.

I wish the best for you!!

Dio

M1, I so very much share your feelings. It's a tough road and we carry so much weight on our shoulders. Please take care of yourself and don't let this disease take two lives.

tigersmom

M1, my heart goes out to you. Who could blame you for not wanting to visit? I think Quilting gave you really good advice. Go and get her the bath, then take a week off, let the phone go to voicemail, and do some things for you. You have more than earned it. I have followed the story of your partner's placement carefully since I'm pretty sure this is what I'm in for when I place my DH. Your partner is safe, well cared-for and back "home" now. Your life, and your health, count too.

ThisLife

M1, I so hear you. I make myself go once a week. As you know my H still has his cell phone. Some days he doesn't call. Others he blows up my phone. I delete the call and the VM without listening. Weekends are usually worse. I sometimes block his number for the weekend. That's hard hearted, but I just can't deal anymore. Every conversation is about when he is coming home and ends when he hangs up on me. At least when he can figure out how to hang up.

I assume your DW is using the phone at the facility. Is there a specific number she calls from that is different from the ones staff might use so you could do something similar. I know this would be a challenge. Wishing you peace.

Denise1847

Dear M1, She is in good care. You are doing everything you can. Think about what you would advise others if they came to you with this scenario. You deserve peace and a break. Start living your life and finding joy again.

Ed1937

"My first thought when i think about visiting is that I don't want to go back". Nobody wants to jump from the skillet into the fire. That's understandable.

"While I know you want to have oversight of her care, you can't meet all her expressed needs ...you can only make sure she is safe and secure." I think this is important to realize. We are human beings, and even though our professions might indicate that we should be able to do everything, the time comes that we really need to accept our limitations. Trying to do too much for too long is a recipe for disaster.

You're still in my prayers.

[Deleted User]

The user and all related content has been deleted.

Buggsroo

Hi M1,

I visit my husband once a week. The visits last about half an hour. He isn’t that verbal but he will answer a question in the shortest form possible. He smiles a lot and is happy. I imagine they have him on all kinds of meds and I am ok about it.

I can’t do more than once a week, it kills me to go because I am facing the fact he is gone. So the fact you are having these feelings is normal. Please don’t feel guilty, it’s an awful disease and it takes a toll on the caregivers as much as the victim. You need a break. You need your life back.

Go to the home, make sure she has her bath and then gracefully bow out. And see if you can cut back some of the visits. I realize my presence is disruptive in a way to my husband, it probably is to your wife as well, she remembers some of your life together so she isn’t acclimating to the home. Go see those grandchildren, I bet they miss you, get more sleep and take your me time. I wish you tranquility.

GothicGremlin

@M1 I'm right there with you, on pretty much every count, including being sick of the whole dementia roller coaster. I'm still ruminating on the advice everyone (including you) gave me in the caregiver's forum. All of it is good.

One thing that's become clear to me (long ago, actually) is that I'm my sister's person, her anchor, as she weathers this disease. And you are that person for your partner. Peggy never wants to let me leave either, and who can blame her? She's holding on for dear life. So is your partner.

But we have to take care of ourselves too, and the question is how to do with minimal disruption to our LOs. As of right now I don't have a great answer.

The other thing that I've been discussing with the other members of "Team Peggy" is exactly what @Buggsroo discussed - I think in some ways, my presence in person, or on the phone, is disruptive to Peggy, and is causing her pain. It's nothing that I'm actively doing, it's only that I leave after every visit. I can't be there 24/7 - which is what she wants. It hurts a lot to realize that, but maybe that's a little of what's going on in your case too? (I hope I haven't overstepped). I'm currently testing out being a little more absent. I haven't called or seen Peggy in two days, but I plan to see her tomorrow. We'll see.

I hope you're able to find some kind of peace and balance.

Elshack

M1 I agree with some of the other posters that advise you to go there to see if she will take a bath or shower and then leave and tell them that you will not be visiting for a week and to call you ONLY if it is a matter of life and death. Your health is at stake and what good will it do your partner if you die and obviously would never see her again?

I always read your posts and know your health is in jeopardy. Please try to see the grandkids or do some things that you enjoy. You always give such empathetic good advice to others and I wish you could give your self that same advice! I live in an apartment which is a 3 min walk from memory care and many a day I have to MAKE myself visit my DH and he is totally cooperative, doesn't speak but a few words and is eating pureed food. I can only imagine how difficult this is for you. You are in my thoughts. As a physician I would bet if you had a patient that told you what you have told us in this post that you would advise him or her to take a break for a physical and mental and psychologal renewal of mind and body and spirit!

Jeff86

M1, I am glad that you know that this is a safe place to vent. You have described to perfection caregiver fatigue. How we all in this forum understand and empathize. This disease is relentlessly demanding and often seems more durable tnan we are. There are times when I want to go away and not come back. I don’t…but the fantasy recurs.

it may be hard to apply, but do recall the right wisdom that this disease has to take down one person but it doesn’t have to take down two. Just one more voice here urging you to take care of yourself.

M1

My friends you bring tears to my eyes, and you all nailed it. Yes GG, i am her anchor, that is an excellent way of putting it. i still love her and the life we had was extraordinary, and I miss her every day. I want her suffering to end.

I know this is a case of physician heal thyself. My health challenges right now are serious. I spent most of yesterday in bed reading. No messages from MC. I plan to check on the bath situation this morning, and if she has continued to refuse I'll go this afternoon.

Fwiw I'm seeing the granddaughters tonight, which will undoubtedly help.

Joydean

M1 so glad you are seeing your granddaughters tonight! Just feeling their energy and their love will be like a ray of sunshine!!

harshedbuzz

Your situation reminds me of that scene in Love Actually where the Laura Linney character finally connects romantically with the Karl--man of her dreams-- only to have her institutionalized brother badger her with calls. When she takes the second call Karl suggests the answering it will not make things better. She takes the call and the budding relationship fizzles.

Iris L.

PWDs don't remember like regular people do. PWDs don't recognize anything, even if they are in their own homes where they have resided for years. So of course, they want to go home. They don't recognize where they are, so they want to get back to where they were before, so they think. The best approach is consistency, so they may have a hope of getting used to where they live now.

Iris

toolbeltexpert

M1 I haven't been on as much lately. One reason is I have been gone from home. I took a trip to see family and brought more stuff to give to my dw's family about 2 weeks ago. I just have to trust that my dw's facility can do want needs to be done in my absence. My dw didn't realize I was gone for a week, her behaviors didn't change, she still cried, wanted to go home, wondered if her parents were dead yes they are. I have the same feelings of obligations as you. As I am writing I am back up north again third time this yr. This time was just for me, I walked the beaches with a new found friend who also has been down the big d road and is 6 yrs stage 8 now. Fate put us together. These 3 times are the only times I haven't been there every day multiple times. But I have done all that I can and you have too. This isn't easy. Everyone here has given you and me good advice. I don't know what that looks like for you but the grandkids and the garden or a short trip sound like a start. As soon as I get back I will probably go right back to everyday multiple times but I will be refreshed looking for the next opportunity to try to live life. I guess I am learning to let go now because Alzheimers isn't going quit.

Stewart

charley0419

Want you say I’m learning is true just can’t wrap my head around what I see slowly happening to my DW

White Crane

M1, I’m so glad you went to see your granddaughters. I hope you had a lovely visit and came home refreshed.

M1

Thanks Brenda, i did enjoy them tremendously, we had dinner and got ready for bed while their folks were out for an early dinner. Did me good.

I went to MC this afternoon after a three day absence, my partner had packed up what belongings she could and was ready to leave. Let me give her a bath, wash her hair, change her sheets and clothes (she was still in the same clothes she had worn in the hospital). They informed me this morning that she had rinsed her toothbrush in the toilet (oh, my) so I brought a new one. we'll obviously need to start locking it up when not in use.

Helped her eat a late lunch -one of the aides made her a pimento cheese sandwich because she had refused to come out for breakfast or the hot noonday meal.

She remembers nothing of being in the hospital.

We have a care plan conference scheduled for next week. I'm not sure when I'll go back.

White Crane

M1, your visit with your granddaughters sounds so nice... and peaceful. You need that peace. I know it's hard to go from the peace and joy to the sadness and stress with your partner. I hope your care plan conference goes well next week and you can spend some time until then relaxing and doing things that you enjoy. Sometimes we just need a break from the chaos of Alzheimer's.

Jo C.

Dear M1; I am so very sorry and it is very understandable. Your body is also not well and needs tending; but our hearts and heads are still intertwined with our LOs in such a situation.

Actually, Quilting's advice is pretty sound. Getting that bathing done, all is in place and letting staff know that you will not be available except in an emergency due to . . . (whatever excuse), and then getting some respite for yourself seems warranted and needed. Still; hard to get one's head off the topic and worrying; that will take a few days to give yourself permission to care for you. She will be safe and secure; and I too think she will eat when hungry or even distracted with no M1 being present and her mind going someplace else. Not able to manipulate your feelings she may find other outlets.

So hope that you will take a respite period; you have done SO much from the very beginning and made a marvelous care process for your Partner; could not have done better. Love will always be there; you also need to love yourself and give your body time out I would think.

Easy for me to say; when I was "there" it was quite awhile ago; but the principles are the same.

With warmest of thoughts and much caring being sent your way with hopes for your peace of mind and rest for your body,

J.