Update(9)

Ed1937

Yesterday my wife and I were sitting on the sofa, with the TV on. She said "What are you going to do?". I asked her what she was talking about. She asked me if we were going to save the baby. ??? There was nothing on the TV about a baby, and I have no idea where this came from. She kept asking me if we were going to save the baby. My stress level has been pretty high, and little things like that make it worse. Things that I would have easily shrugged off a few weeks ago are no longer little.

Our daughter, who has been such a help, has told me numerous times that she will support me in whatever decisions I make, but never tried to steer me on decisions. Only support. Yesterday although she didn't say anything to make me doubt her support, she made it clear that she thinks it's time for her mother to be placed. She is worried about me, and she told me I was no longer able to provide the care that my wife needs, and it would be best for both of us if she were placed. So I think this will happen sooner rather than later, if I can get her in a facility. 

She is the mother of my kids, my wife, and my very best friend. We have been pretty much inseparable for a very long time. She will be devastated when this happens, as will I.

BethL

Thinking of you, Ed. You have been a wonderful husband and caregiver. You will make the right decision; no decision is easy or "happy" in this circumstance. I said a prayer for you for peace and wisdom.

JDancer

So sorry you are facing this transition. I'll be thinking of you and your LO.

Quilting brings calm

What a beautiful daughter to step up and tell you it’s time. I bet she’s been  thinking it for a while and waiting for you to get it all straight in your mind.   Hang in there Ed.  Start looking and remember - you aren’t alone.  Lots of spouses on this forum have been at the ‘it’s time’ stage recently.

Jo C.

Your daughter is a wise and caring person; she loves her parents and has been walking hand in hand with both of you along this journey.  With her respect and care, your daughter has shared that she sees it is time to make a change for the well being of both of her parents,  and from your writing re stress and the advancement of the dementia, it appears she is correct.

I would never minimize the emotions that come along with making such a decision; it is the "big" one and is deeply affecting to the bottom of one's heart.   How wonderful a blessing it is to have your daughter continue to be with you as choices are made.

You are a good person and a good and loving husband as well as a man of principles.  As has been said with so many; you will not be abandoning your wife, you will still be her carer - just in a different way which permits you to be her loving husband once again as well as her advocate without the overwhelming physical and emotional stress that can so badly affect one's own health.

Best wishes and warmest of thoughts are sent to you, your wife and your dear daughter,

J. 

jfkoc

Comes the time when I think a bond turns into the creation of one person. It is a very special thing but with it can come horrible pain from separation.

The loss  one feels with each realized decline is devastating. I think it is maybe not as hard to have death be the separater rather than placement. 

Take to heart your daughters concern.

Beachfan

Ed,

My heart aches for you.  I, too, thought that I could physically, mentally, spiritually, and emotionally continue to care for DH at home.  The kids thought otherwise.  Collectively, we made the decision to place DH, for his well being and for mine.  I miss him and love him with all my heart, but I have never looked back and doubted “our” decision.   Best wishes going forward; nothing about this is easy.  Thankfully, you have family support, whichever direction you take.  

M1

Ed, I know exactly how you feel.  The objectivity of others helps:  just as so many on this forum knew it was time for us here, I agree with your daughter, it's time for you too.  But that doesn't make it any easier.  It feels like being ripped in half.  I'm so sorry my friend.

Gig Harbor

Ed I am so sorry that things are not going well. Is your wife incontinent? I have said that that will be my breaking point but I am looking at placement and my husband is still continent. This morning he had on three shirts, three pairs of underwear and my jeans which were too small. He was mad when I made him remove the excess clothes and put on his own jeans. I get so frustrated that I end up yelling and then I feel bad. I talked to my daughter this morning and said I thought placement would be sooner rather than later in the future. I am going to take in a check this week to get his name on their list although they are not full now and he could move in immediately. I hope that as soon as I write the check I will feel a weight lifting and maybe can go on a bit longer. Our weather is finally warming up and he loves the view from our deck. I hate to deprive him of that but I think he will forget our house within a week or two. Three weeks ago he could fold laundry very well but now he struggles and simply cannot do it. I think that we are in for a miserable, stressful month. Hang in there.

Pam BH

Ed, my heart and prayers go out for you. You're an absolutely wonderful caregiver. I echo everything Jo said and the others who've posted. You are well loved here and we support you fully.

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jmlarue

So many of us in the same boat, Ed. I, too, oft repeat the statement..."sooner rather than later." Every time I steel my resolve to move forward with placement, someone/something throws up  roadblocks. I'm so battle fatigued, I give up the hunt and tell myself that I can hold off just a little longer. If it's possible for your daughter to partner with you in searching for a suitable placement for her mom, the whole process should feel less insurmountable. Having another person share in the decision-making would certainly help me. For one, it would tamp down the constant self-doubt that I'm doing the right thing, at the right time, and for the right reasons. When roadblocks are encountered, what a blessing it would be to have another person, who is not yet war weary, to step in and take the lead for a time. I sincerely hope your daughter will step into the breech to help you find the way forward without delay. My thoughts and prayers go with you.

Marie58

Ed, I get it. It's such a devastating decision to have to make. But your daughter is wise and loving. It was our son and daughter-in-law who saw my stress, impatience and the impact on my life as I did 24/7 care for my DH who couldn't do anything by himself. I was sleep deprived and couldn't really leave the house as it got too hard to take him anywhere. A drive-through window at a fast food restaurant was a big outing! Sometimes others see what we don't. I'm glad you have family support and that you're starting your search. I pray it goes well and that you'll know when the right time is.  Blessings to you both.

Mint

Thinking of you Ed.  So is your daughter.

Paris20

I’m sorry, Ed. If it’s any consolation, many of us go through the same tough thoughts many times. «If he/she starts doing X, then it’s time for memory care.» When I first asked that question, I didn’t think about how many Xs need to happen before I act. Not knowing me?Only happened once. Incontinence #2? Only happened twice. Couldn’t find our bedroom? Etc. We all know when we see some fearful new symptom, we’ll see it again. Ed, your daughter agrees it’s time. She loves both her parents and is advising you wisely.

Jeff86

Ed, I grieve for you and with you as you face this most difficult but also, alas, necessary decision.  Others have rightly noted your daughter’s kind, gentle, knowing nudge, but as we follow one another’s journeys on this site, it’s been increasingly clear from your own postings that you have reached and perhaps surpassed unsustainable levels of stress.   Your DW needs more care, and you need less hands-on caregiving.  

We have your back as you take the next steps on this journey.   You have been a caregiver warrior.  You are strong enough to do this, as hard as it is.  And as heart-breaking as it is.    Courage, my friend. 

Joydean

Ed, my thoughts and prayers are with you and your dear wife. As so many have said, your daughter loves both her parents. She has been and will continue to be a blessing to both of you. Your stress level is hurting you both. I don’t say that to be unkind! I hope you know that.

abc123

Ed, I have a great deal of respect for you and your daughter. I am in the same position as your dear daughter. My boat is sinking with both my parents in it. If my mother continues to hang on much longer, ( it's very possible) it will be too late for my dad to save himself. Much too late. I know you love your dear wife with all of your being but please consider the many other people who need you and love you. I'm sorry this is so hard. I hate this disease. It's like a cat 5 hurricane and leaves nothing behind but destruction and pain. Ed, you are in my prayers and my thoughts daily. Please take care of yourself.

Ed1937

Thanks to all of you for your constant support. I have made the decision. She will be placed as soon as I can get all bases covered, and there is an opening for her. She refused her medications this morning, and I didn't argue with her. She probably won't get them today. She also refused to change her incontinence underwear when she got out of bed this morning. I tore them off of her, but I can't continue to do things like that unless really necessary, considering the stress I make worse when I do things like that. If she goes in the bathroom, and has a mess, that's when the worst stress raises it's head. Today, I'll just let her make the mess, and clean it up when she's done. It might take all day to clean the bathroom, but that will be better than her fighting me while I'm trying to help her. I have a doctor appointment this afternoon. Hoping for a little help there.

Jo C.

Understood Ed; the time is now and I so hope a slot for admission is found very soon.

 Just had a thought . . . if you find a facility you are comfortable with, but they have no current opening for a new fulltime resident; I wonder if they have Respite Care and could take your wife for a period of respite for a couple or few weeks. Then by the time that respite is ending, perhaps they will have an opening and your wife can be admitted as a full time patient/resident.

Even if there is no respite care at your facility of choice, would you consider respite at another facility until such time a spot opens for her at the chosen facility - or if she has to return home for an additional wait, at least you would have some breathing space for several weeks. 

Sending sincere best of wishes for a swift alternative living setting to be found.

J.

Pam BH

Prayers for you to get through the day, Ed. Your logic is perfect and your patience and compassion is more than admirable. One day at a time.

caberr

Ed, I truly feel for you.  This has to be so hard.  You have been there for your wife and have done a great job!  Hoping all goes well for you.

White Crane

Ed, I am so sorry. You’ve been such a wonderful husband and caregiver for a long time. Now it’s time to release her to the care of others.  My prayers are with you and your wife during this difficult time.

JoseyWales

Ed, I'm so sorry. I know you wanted to take care of her at home. In my imagination I thought I could do it to the end, too. But this isn't anything like we imagined, is it?

My son was the one who pushed me over the brink of "should I or shouldn't I?" Although only 21, he told me that we should place dad because it was too hard on me. 

I hope you can find a nice facility, close by, with a room that opens up quickly.

Cherjer

Ed, I have admired you for taking such loving care of your wife. You have been so gentle, patient and loving and at the same time giving all of us such motivation and lots of information. There certainly is a turning point when one cannot do this alone and sounds like you have reached it. I pray that all goes well with you and think the respite care that Jo advised while you are waiting is a really good plan.

Ed1937

Thanks so much, friends. I have a pretty busy week, so might not be online very much. Hope things go well for all here.

Doityourselfer

Ed,  I wish the best for you and your wife.

Joydean

Ed, prayers for you and your dear wife!

jfkoc

sigh....please do post at least a few words when you can.

Jo C.

My thoughts are with you as you move forward and so hope all goes well.
 

 J.