Follow
Share

I put him in day care for the first time today and I was miserable all day. I picked him up early. I feel like I am abandoning him. Like I am betraying his trust in me. Or betraying our marital vows of for better or for worse, in sickness and in health. I am scolding myself for not being strong enough to continue caring for him at home. But I also feel like I am at the very end of my endurance and I am terrified that I might go before he does. So I need to make sure he is well taken care of in that event.

Logically, I know that he needs more care than I can give. I am trying to think logically and factually and put him where he can be cared for well for the rest of his life.

So why do I feel so horrible? Why do I feel like I am being weak and not meeting with my responsibilities? I am I so guilt-ridden? I cannot accept that my life as I knew it is gone and that he is gone. How do others do it?

This question has been closed for answers. Ask a New Question.
Dee, you are feeling everything that all the rest of us have felt. Guilt, abandonment, love, longing for the old days, all of those feelings of loss and mourning what you once had, as well as mourning losing him already! My husband was where your husband is about a year ago. I still have him at home. He is in beginning stage 7. He has every symptom but he is still mobile and eating pretty well. He refuses stuff to eat now, but still is eating well. He doesn't drink enough. But he is mobile and walks all over the house. He still sleeps in bed with me. Usually I am the one awake at midnight and the one who has to get up for the bathroom. He mostly sleeps through the night. He finally lets me put him on the potty, as Bob DeMarco recommends. Before he would not let me do that and I was constantly cleaning up floods and messes. For now that part is better. I SMILE all the time to keep him happy. I am never negative with him. It is exhausting not to mention all the clean up. And I maintain the house inside and outside. I recently had to give up outside because he pooped in the garage while I was mowing the yard. I assume he was looking for me. He does not run away. He follows me everywhere like a puppy. It is exhausting. Did I say that before? Yes I did. If I could afford it I would put him in a home. But I make too much money to get Medicaid and not enough to pay for Nursing Home. I have some VA benefits and they give me 10 hours a week of a caregiver. But he won't let anyone else touch him. I had to change him and give him a bath yesterday because he pooped himself right as she came in. I try to get out when the caregiver arrives so I can have some me time. Even if it is only to walk the dogs, I go out. Recently I went to a movie during my free time. Anything for a break. I also had a Respite vacation, while he stayed for a week in a nursing home. I felt terribly guilty for 24 hours and then when I got to the beach, I got over it. Do the best you can. Get as many breaks as you can. Nobody is going to do this except for you! Take care of yourself as best you can. Hugs to you and we all feel your anxiety and sadness. We are going through the same. And most of all I miss talking to my friends, running around with them and being isolated with no one to talk to.
Helpful Answer (1)
Report

Just remembered...must have gotten the costumes mixed up after returning from my flight around the world to save the polar bears, whales, dolphins and other marine life from poachers and global warming.

It was quite an ordeal to move all the polar bears back up to the colder regions from where they came after running low on food and wandering into settlements.

And the whales....Boy, those beauties are magnificent but I sure couldn't keep up with swimming alongside them trying to get them to stay away from the oil rigs in their territories.

We caregivers have superhuman powers, you know. At least that's what doctors, therapists and APS seem to think.
Helpful Answer (1)
Report

ha ha ha ha ha ha!!

Now you know my secret!
Helpful Answer (2)
Report

GA, I think your Wonder Woman costume is in the front closet hanging next to the hobo costume, or is that the bag lady costume?
Helpful Answer (1)
Report

Sandwich, your statement that

"Society assigns totally unrealistic expectations to elder care. Expectations that very few are really able to meet in real life."

That is sooooooo true.

...Expectations such as

(a) the caregiver doesn't need to have a life of his/her own

(b) the caregiver is going to be able to handle a myriad of tasks that are challenging, difficult, physically demanding, emotionally frustrating, or sometimes just offensive.

(c) The caregiver is like the Energizer Bunny.

(d) Somehow the caregiver will manage on limited funds.

Okay, down off the soapbox now and end of rant.

But where did I put my Wonder Woman outfit??
Helpful Answer (4)
Report

Sometimes doing the necessary (right) thing doesn't feel good and that's because we are setup beforehand to have the guilt button pushed. There is going to be a period of adjustment.

Society assigns totally unrealistic expectations to elder care. Expectations that very few are really able to meet in real life. The "home care vision" assumes a lot of things that may not be true, such as access to a lot of help to get things done, and it tells a lie. The lie is that there's nothing to worry about if you do home care. Everything will be great, like on TV. See how happy people are in the brochures for home care?

Add on old information from the past where nursing homes and mental wards were the same thing. The old standard of care that used restraints, didn't have modern psychiatric medicines for dementia care, and understood very little about diseases of the human brain. If you are burdened that these things are still true, it is a very distressing situation to be in.

So we've all been setup to fear these kinds of transitions, to avoid them, and to be victimized by them when it's not necessary.

I have a long list somewhere on this site of all the ways the dementia care unit for my mom is doing things not remotely possible in my home or hers. Her quality of life is much higher there. This option is not magical or perfect either. It too has pros & cons - just like home care. These brochures also project a very ideal moment in time with the people involved .

It supports our family being able to be normal and not have to convert the house to a dementia ward. I don't have to force my teenagers to live in a dementia house where they would never have friends over or enjoy themselves. We can go out for dinner. I get respite. My husband gets respite. We can work, pay our bills, and put a little away for our own retirement & old age. This is what works for us.

I cannot abide anyone who gets up on a high horse and condemns anybody who isn't doing it "their way". We live in a country with choices. More choices exist now than 10 or 20 years ago. The range of kinds of residences is really amazing. Home care businesses are a lot more prevalent, and ways to adapt a house are a lot easier to find and build in now. But not every community has them all, which is sad.
Helpful Answer (3)
Report

You are an amazing person. Why not try to have someone to come in and help you 3 to 4 hrs as day for a couple days a week. But I do think the day care is an amazing thing to do. His memory is probably back on earlier days. When you do talk to him talk about talk about things that you did when you both were happy. Maybe places you traveled. I would suggest a support group also. They are wonderful.. Remember everyone is different. Some things work with one does not always work for someone else. Also something that you hear and talk about in the support group you may have not thought about. Is your husband a veteran? When he is at the DAY SPA - treat yourself to something like lunch, a walk in the park, do you have children or grandchildren?
Helpful Answer (2)
Report

As long as you remember that two people are on this journey, you and your husband, and continue to do what is good for both of you, you are on the right road. Don't be afraid to ask for help or hire someone to help you. We hired a woman from my sisters church to sit with my parents a few afternoons a week. Most of the time I went home and slept but it was wonderful to be able to recharge. God Bless and good luck. 😊
Helpful Answer (3)
Report

thank you all so much. It is a very agonizing trial to go through. The worst decision of my life. And I know that my whole life is going to be different. Certainly , not the life I had planned or hoped for. But I really want my husband well placed and taken care of because I am truly declining myself. And I will try not to let the opinions of others influence me. All these horrible feelings of inferiority and guilt are only destructive when you are so depleted in the first place.

It helps to realize as you say that he is in better care with refreshed people than with me as exhausted as I am. I guess it is a natural reaction to hold on to your old life with all your might, even though it is not a good or healthy one.

I just hope that he is not inwardly unhappy or missing me, because he cannot tell me. It is so hard to make the people you love sad when they are away from their familiarity. But we now sleep in different bedrooms because I cannot get any sleep with his constant coming and going into the bedroom all night. So it seems that he is comfortable with being alone in bed now.

So I am trying to go forward in this tragic journey with the best interests of my loved one. I must realize that I cannot sacrifice myself totally because it is not for his or my benefit. Thank you all, again, so much.
Helpful Answer (6)
Report

Such wonderful and touching posts above. It takes someone who has gone through it to fully understand. I know it must be a challenging experience.

I did not have to place my husband for care, but I did my cousin. I was her DPOA and there was no one else to advocate or care for her. Initially, I was the only caretaker, but due to my business, care for my own parents and degree of dementia, I had to place her in Memory Care. I think that when you see the need the person has, you do what they need, which is to place them in an environment where they can get proper supervision, medication, etc. I knew it was the right thing and therefore, I was at peace with it. I hope you can find that peace. People who are unfamiliar with dementia, may not understand placement, but if you do know dementia, you get it.

I wouldn't concern myself with what anyone else thought. You know the right thing to do. Do it and have peace with it.

I will also add that when my cousin went into the Memory Care Unit, she seemed so much more relaxed and content. It was as if she felt more at home with other people who have dementia. I've been told that is not uncommon. I hope that helps. I wish you and your family the best.
Helpful Answer (4)
Report

Jeanne, your post was realistically but very poetically and emotionally expressed. You've captured the essence of how to balance the challenges of home vs. facility care, and placed it in perspective of how also to balance those two different elements while remaining true to one's partner.
Helpful Answer (3)
Report

Jeanne does a wonderful response!

Dee, we all need help at some point, and it takes time for us to adjust. When I started my mom in day care,I too, felt guilty, would pick her up early, and worry the entire time she was gone. That is not respite. It is something we need to adjust to. And once we do, it becomes easier, and the help allows us to keep them at home even just a bit longer. In my caes, it was four years longer. Very significant!
Helpful Answer (3)
Report

Jeanne, such a heartfelt wonderful response 😊
Helpful Answer (3)
Report

How do others do it? Probably not much differently than you are. We hurt. We feel mad. We feel guilty. We feel inadequate.

We belong to local in-person caregiver support groups. We come here and interact with others. We get strength wherever we can find it.

I highly recommend a book called "Loving Someone Who Has Dementia" by therapist Pauline Boss. She offers a meaningful insight into the realities we face.

I took our marriage vows very seriously. I vowed to be there for him "in sickness and in health." But "being there for him" meant to me advocating for him and seeing to it he got the best care he could. It did not mean I had to personally give him second-best care when some other arrangement would be best for him, and for our relationship. If your husband needs more than you can give, then I think it is selfish of you to prevent him from getting all that he needs. I understand that selfishness -- believe me, I wanted to be the one who met all my husband's needs.

You are off to a good start with the day program. I urge you to continue with that. Don't pick him up early to meet your own emotional needs. Allow him to have the full experience. And give him several weeks to settle in. Having these short periods of respite during the week can help enable you to care for him at home longer. And I think that is what you want, right?

When my husband's needs became too great for the wonderful day program he was in, we had a personal care attendant come in 32 hours a week. I also had a housecleaner who laundered the bedding, and a son who handled the yardwork and maintenance chores. Having help can be a life-saver when you are stretched beyond what you can do alone. If the day program has a social worker, that person can probably help you arrange some in-home help. Take advantage of that!

Because you want him to stay with you, and I understand that very well, get help arranging things to be easier on you so that it is possible to do that with out endangering yourself. You both deserve that!

And when the time comes when the best thing for him is a structured environment with three shifts of staff to look after his needs, know that you will continue to be his advocate, to be his wife, to be his source of comfort and love. You both may be better off if you can spend a lot of time with him without having to do the hands-on caregiving.

You dying first is a risk. It is not totally in your hands, of course, but to the extent that you can, I think taking care of yourself and not over-stressing or over-working yourself is the best way you can fulfill your vow of "for better or for worse."

I never promised my husband that I would not put him in long-term care. I did promise him that I would never abandon him. Having your husband in a day program is certainly not abandoning him! And placing him in a good environment will not be abandoning him. Don't you even think that way! You are fulfilling your vows to do your best for him, until death parts you.

Your life as you knew it is gone, whether you can accept that or not. There is a "new normal" in your life. Make it the best it can be, but accept that it is never going to be as it once was.

Sorry for going on and on, but my heart really does go out to you. My husband died of dementia 2+ years again, and I haven't quite found my newest normal yet.
Helpful Answer (10)
Report

This question has been closed for answers. Ask a New Question.