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She’s been in there for six months and I try to visit 5 times a week. She’s in clozapine and now is in a wheel chair, can’t walk , has to be feed and is very highly medicated. When I talk to her, she nods and may say one word answers. How do I face the pain I feel by my choice to place her in care— I’m not sure that I made the right decisions; No one helped me.

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"I’m not sure that I made the right decisions; No one helped me."

Given your description of her condition, it does sound like you made the right decision - not an easy one, but the best for both of you. We don't know your age or condition, but guessing that you are both up there in age, it would have been more difficult to keep her home and try to do it yourself. Even with help it is difficult, and home care (24/7) is more expensive, sometimes prohibitively expensive.

Many of us also have to make these decisions without help. Even with help, the final decision is yours alone to make. Others can suggest, advise, inform, but we can't make the decisions for you.

As for how to deal with feelings, realizing she'll never be with you... although physically she won't be with you in your home, she will ALWAYS be with you in spirit, in your heart and your memories. Hold those close, cherish and enjoy them when you can. Sometimes they will make you sad, knowing you won't get chances to make many more memories, but remember the good times, the funny moments.

It is wonderful that you can visit her 5x per week. Even if she can't really talk, she likely knows you are there. Talk of memories, touch her often, hold her hand, kiss her and caress her. It will help you both.
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NobodyGetsIt Oct 2020
"disgustedtoo," -

Beautifully said!

He's fortunate he's able to visit that often and they always say their hearing is the last to go which I actually find comforting and hope he does too.
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Oh of course you cry! This is incredibly sad.Each of us is talking in some way of losing our loved one, long before they are actually dead. So you are grieving this huge loss of who she used to be and suffering guilt as if you should have somehow found a miracle for her. It is SO hard for us to feel our loved one slip through our fingers. How long were you married? Do you have people to talk to about your deep sadness? When someone dies there are funerals and people gather to try to offer comfort. When somebody is dying by inches, we are largely alone, lonely and depressed. Please leave your feelings with us.
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I feel that you did the right thing. I was at that point with my DW. Unfortunately things got worse real quick and she was back in the hospital and then to hospice. I still am not sure tht I did the right thing and it bothers me. I know and feel she is in a better place. But does not fill the emptiness of her not being here. I talk to her pictures a lot. Mostly just short comments because there is no one else to talk too here.
I still have the memories and sometimes I cry. Like now.
People have said to go to her and hold her, hug her, talk to her and tell her you love her. I feel she will know what you are saying even though she cannot answer. Just listen to her sounds and learn to read her face. The loneliness and emptiness may never go away. But the pressure of it will become less.
Eating may become really bad because of the empty chair across from you is where she is supposed to be.
Cry anytime and any place you feel like. Remember the good times and the bed. Talk to her about them
Some will say she has no idea what you are saying. I don't believe that. She just cannot respond correctly.
When leaving for the day try to do your crying in the parking lot before driving.
She will know that you have done your best to care for her.
God bless you for all of your efforts.
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polarbear Oct 2020
OldSailor - my heart breaks for you.
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As the disease takes its toll on our LOs at home, our options as a caregiver get less and less until there is only one option left... a care facility, in your case a nursing home. Caring for someone at home is no job for the weak of heart. You wouldn't have been able to care for her at home. No one helps any of us make that life changing the decision. But weighing our ability to provide proper care and acting in our wife's best interest, we make the decision thru our tears. You may be haunted by your decision but I've never known it to be the wrong decision.

I'm glad that you're able to visit her often. Continue to talk to her even if you get no reply. She knows you're there. Love never dies. My wife's facility had a picture book of babies dressed as flowers that we paged thru every time I visited. It actually held her attention. Is there something like that you could share with her?

It's hard knowing she'll never come home. It's a couple of years since my wife's death and the grief has subsided but the loneliness prevails. If you have a church, make an appointment with the pastor to talk about your grief. They often can help. Talking to someone can be very theurapeutic.

I know nothing I can say can soften the fact your wife is no longer at home but know that you made the right decision and she's getting the best of care. So go ahead and cry. And know that she misses you too.
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NeedHelpWithMom Sep 2020
So sorry for your loss. Your wife was blessed to have such a kind and compassionate husband. What a lovely post. There is nothing like the voice of experience.
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I’m so sorry that you suffering. You have no control over this. I know that you wish you had a magic wand to wave and make all of the pain go away, or better still a time machine to go back to long before this pain began.

None of this is anyone’s fault so let go of any guilt. You are grieving for the life you once had. This is one of life’s most difficult challenges. You are faced with a situation that no one wants to be in. You made the right choice to place her. It was a selfless choice knowing that you could no longer care for her by yourself. It takes strength to let go.

Take comfort that your wife appreciates your kindness and compassion. She loves you just as much as you love her. Rest assured that didn’t die. You are mourning for what she isn’t able to show you. Allow yourself to feel her love in your heart.

Take care, my friend. You are a dear husband. Cry as much as you need to. Tears are healing.
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Buddha, your love for your wife shines through. You wouldn't be feeling guilty and second guessing your decision if you were a callous, uncaring person. So the fact you did what was so hard for your wife's own good knowing how difficult it would be is a sign that it was so necessary or you would not have done it. No one helped you but you still had the courage to do it. Bravo to you!

As for realizing she'll never be with you there in your house again. Think about how she would be if she was there with you right now. She'd be highly medicated, in a wheelchair, you would be exhausted caring for her yourself, probably unable to appreciate her presence there anyways. Remember how she was when she was vibrant and healthy. Be thankful for those times. Comfort yourself with the knowledge she is where she needs to be now. You could not have done differently. I think you know this.

Be well and don't beat yourself up. You did good.
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I am so sorry for you going through all of this, but it will get much harder as your wife declines. She needs 24 hours of professional care. It is in the best interest of your wife that you placed her. Doing it alone is really not a good option. You are a loving and wonderful husband and she is so fortunate to have you. Please take care of yourself and know you made the right decision. I take care of my 98 year old mother so I know how difficult it can get. Please do not in any way feel guilty. I think it is great you visit her five days per week, but make sure you take care of yourself and get some rest. Sending my thoughts and prayers to you.
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I've said this before here, and I'm saying it again:

You made a vow to love and care for her in sickness and in health. You ARE caring for her by doing what's best for her care. Please don't beat yourself up about that.

I assume you and your wife have been together a long time. You won't quickly get over not having her at home. Let yourself grieve that loss, but also try to have some things to do for yourself outside of visiting her. Maybe go to breakfast with a friend, or join a club just to get some human connections for yourself. That will help your attitude when you visit your wife.
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My dear friend of many years recently had to move his mother into a full time care facility.

With 8 children, they really thought they could meet all her needs, but found quickly that she was a MUCH MORE needy patient than they realized. Prior to moving her, her DH was caring for her, round the clock with only a few hours a week of respite. This worked for about 8 years.

DH died, suddenly and left mom alone and 'stranded'.

Most her kids have small-ish families of their own, where their energies should be going. They tried, mightily to keep her home, but it was exhausting to them. Again--there were 16 adults and about 10 'older' grandkids who could stay a night or lift her, etc., but it took more than 26 people to keep one little lady safe and cared for. Think about that!

The move to Independent living happened right before COVID, so she has not been happy, but they do not even consider taking her out.

My friend (her son) said she has been alternately angry and sad that she is 'stuck' in place, but realistically, her health is so poor, she would be staying 'in isolation' anyway. I asked him if he had regrets and he said his only regret was that she was unable to see the family--but COVID will end and she will be able to do so. There was NEVER a discussion about anyone taking her in--sometimes people simply need more care than one person (or 26!) can effectively handle.

I've known this woman for 45 years and she is a really, really high maintenance person. And, even though she has always had terrible health, she will no doubt live to 90. Her kids were smart enough to see that they had to do what was best for them, and her.
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My parents at 95 refuse to go to a community no matter what. Loads of problems at home with caregivers all the time is not perfect.

Sis in community care with Dementia is actually in worse shape than my dad. She is fading fast. I have grieved the "loss" of their abilities to have conversation, fun, activities, etc. with all these family members. Covid has made it so much worse for my sister. Sis community is in total lockdown due to staff covid case until further notice. I thought about bringing my sister home but knew i could not do it every day all day forever-it is a hard hard job as all will tell you is the reality of keeping a LO at home. Take care of yourself is important too get counseling if you can from a pastor or others.

The good old days are in the past I am sad about that I have cried as my sister has cried a lot about dramatic changes in her life over the past year. It was a little easier when i got to the point of accepting this is their life now I can not change it or stop what is happening to them. I can wish and wish til the cows come home for it to all be different or better but that just makes it harder to be present in the here and now.
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