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.
Your wife's care needs became too great for one person in a home setting - this happens to many, it cannot be helped. You took the only direction possible.
May you continue your loving visits & I trust in time, acceptance will come. You will have treasured memories of your earlier active time together when younger & also of these later times where you hold her hand with love.
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.
In very similar situations, some of us have said, with tears running down our cheeks, "Thank God she passed..." (and no longer has to suffer)... or "Thank God for all the years we had together."
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.
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.
Stay Strong.
when my son was terminally ill i freaked out that i might have to put him into a nursing facility and determined that no matter what i would take care of him at home. But i didnt have long tho since he died about two months after getting into home hospice.
but for myself ... i fully intend to go to a facility.
there is “more” care there ... hopefully ... and all i ask is a family member or friend to come regularly to make sure about my being cared for decently.
would your wife feel like me ?
i cant say that you feel may this but in an odd-sounding way youre still caring for her ... there is someone to take care of her food/medical/toileting all day every day and youre overseeing that it’s done and youre not overtired and can make good decisions.
best wishes to you.
Its inevitably so, a couple that lives long, one will need to be in a Safer environment.. right?
Nothaving anyone to help you make decisions makes you probably feel more guilty.
But you aren't guilty of doing anything except putting her in a safe place!
Just keep an eye on her care, her meds, why she's on each one, & visit.
Quik story;
My dad got very sick. He went from kaiser to an assisted living for a bit.. in the interum, ..my mom was getting sicker too. Off to kaiser she went.. then a miracle .... she also needed to go to assisted living for a bit..my sis n I went to visit my mom & my dad was in the nxt room where my mother was!! THAT'S GODS WORK.
they came home, went back n forth.. & you too will have your miracle..
Gof bless you.
I feel your pain even though my loved one is non my spouse, but a close relative. He is soon to be 86. It took a while for the adjustment for him. He went to the facility first for rehab, then 6 months later they had a room in the long term care area. It was of course easier when we could go inside and visit with him in his room. But he is on the first floor so I can have window visits with him whenever I want. When he sees us I can always see a big smile on his face. He is happy. Give your wife time to adjust, it may take you both a while to adjust to this. Maybe by the time this virus leaves us and we are allowed back in facilities and can hug and kiss our loved ones all will be better.
I agree with all the wonderful supportive posts below, but have one additional consideration for you—
If you have serious regret and can afford and tolerate bringing in in-home care to help, bring your wife back home for your own peace of mind.
Your wife could be over medicated in the facility.
Some care facilities give the patients extra medications to placate the whole group. I experienced this first-hand during a visit to a family member. I was offered a paper shot glass of “Kool-Aid” by a staffer circulating with a large tray of small cups on a very hot day. After quickly downing the strange-tasting “refreshment” I immediately detected a strong medicinal aftertaste. My teenage daughter also took an offered cup, but didn’t take a drink after noticing its strong unusual medicinal smell.
Despite the time of day (late morning), my relative youth and good health, I could not keep my eyes open and did not feel competent to drive home. I had never felt like that before. My daughter asked, “Why did you drink that spiked Kool-Aid? — You’ve been drugged!” I still can’t believe they offered it to visitors!
I discussed this incident with a friend who is a federal nursing home regulator and learned this practice of (rather secretly) medicating residents is both allowable and widespread.
My mom was overmedicated at home once following a series of short hospitalizations. (The medications had been added or increased steadily in small increments). When we figured out what was happening and weaned her off the medications in conjunction with her primary care provider and cardiologist, she was able to discontinue oxygen, she no longer needed a wheelchair (she returned to walking without a cane or walker!) and her memory and conversation returned to normal. (Do not attempt to reduce any medications without the supervision of a doctor as reducing medications too quickly can be life-threatening). The doctors were initially reluctant to consider overmedication as a possibility, attributing Mom’s decreased mobility and speech to advanced age, (incorrectly diagnosed) dementia and (incorrectly diagnosed) multiple organ failure.
I am not saying what the OP should do. That is his choice to make and I don’t feel as if he is able to care for her. I definitely don’t want to make him feel guilty about placing her but I totally understand what you are saying.
I have seen elders severely sedated in a few of our nursing homes too.
In fact, mom’s home health nurse told me the same. She knew who mom’s doctor was
but we were having a casual conversation about doctors and she asked me who did I go to. I told her.
She asked me if I was aware that my doctor was the doctor in charge of nursing home facilities near us. I said yes, I knew that he was very involved in senior care.
She asking me if I was happy with him. I said that I was. She then said that his private practice was fine but that he over medicated the seniors at homes on a regular basis.
I saw this myself when I was touring possible nursing homes for my home. None of them were walking. They barely ate their meals. They looked like zombies. They were in wheelchairs hunched over.
It was awful. It was then that I decided to look at assisted living facilities instead. I no longer see this doctor.
He retired from private practice and is only doing nursing home care. It’s disturbing. It really is.
I would rather be in an assisted living facility. I am only speaking about my area because I know it. I can’t speak for other areas. Some nursing homes are good.
I’m so sorry that you drank that beverage. That’s crazy that they offered it to guests.
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.
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.
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.
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.
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.
you are grieving the lost of what was and now that you’re are more on the outside And not in trenches you see clearer.
dont wallow to long in this sorrow.
I love that - "doing the right thing is never the easiest thing." I too need to remember those words of wisdom.
Thank you!
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.
Could you have cared for her at home? And if so, could you provide the care she's now getting?
I think you're in a hard place, one that many people face. Just try to remember that you are doing as much as you can, and that's all and the best you can do.