Why, oh why?

toolbeltexpert

I want to add something, I mentioned I would place my wife and even give up the farm if I had to. But I say that because I have seen so many caring people in my years of visiting nhf. I am speaking from experience that gives me hope that if I had to, there are lots and lots of good professionals doing a great job. Don't get me wrong,I have seen a Sunday afternoon understaffed situation where I got upset at the care the folks were getting. But I also understood they were doing the best they could. I have seen many different types of care facilities and in every one there were caring individuals. It did come down to what you could afford however, to get nice rooms, and better food.

Pam BH

Reading all these from the heart responses made me realize how much this forum has helped me. One of the ways is I've realized being a loving caregiver means doing what's best for DH, which doesn't preclude what's best for me and the rest of the family. I've learned being a martyr and neglecting my own health isn't what's best for DH or what he would want. Probably the biggest change in my thinking is realizing being open to an MC is a loving way to care for him if it's the best thing for him and us. Going into caregiving I was staunchly opposed to placing him because I naively thought it would be failing, but it's not in the least. Like so many others here I've compiled in my mind a list of situations where I'll know it's time, and not only time but the right thing to do for the best loving care for DH.  Thank you, Crushed, for opening my eyes to how hurtful my naive thinking would have been to the many brave caregivers who are caring for their spouses in the best way. I've got a lot more to learn on this path we're on and unfortunately the lessons will keep coming! I love this forum and all the heartfelt responses where we can talk openly and freely.

JudyMorrowMaloney

I tried the nursing home thing and it was a real disaster. The place was understaffed, it was dumpy, and the food was terrible. My DH couldn't adjust. They had so many nit picky rules that even I got tired of them. They almost lost a resident due to a piece of equipment that didn't work. That was the last straw for me. It hasn't been easy and it just plain sucks. But I do it anyway.

Lills

I chose to care for my DH at home because I still can.  I love him, and I know he's getting quality care at home (with 3 hours of daily help).  We've been together for 46 years and have done everything together.  I vowed that I would consider moving him to a skilled nursing home if I felt I couldn't provide the care he needed.  So far, so good.  Another reason is that back in 2019 he went to a TCU for 5 days and the care was horrendous.  The staff (including RNs) did not understand dementia, which in a few occasions would have been life-threatening had I not been there.    

My situation is different than others here.  In addition to FTD, DH has ALS.  I'm so careful of HOW I move him, change him, etc.  I'm not convinced that the staff would know how to carefully move him without causing pain, especially with any (young and inexperienced) staff/CNAs.  

Without a doubt, he'd care for me if our roles were reversed.  

Ed1937

Quilting, these are fair questions.

I’m going to turn the question around- why do you ask? I asked the question because it was a question posed to the audience taking the course I'm currently taking, and I thought it would be a thought provoking question here.

Did you want the reminder of why you started caregiving because it’s been so hard especially lately? No. My reason for caregiving has not changed since day one. It's all about loving my wife, and doing what I can to give her the care she deserves. Admittedly it's been over the top hard recently, but I'm working on it.

Did you maybe not realize what you were getting into when it began( who does)? I probably had a better idea of what was coming than most do because I was on this forum for a few months before we got a diagnosis.

Are you feeling like you are doing it out of a sense of obligation instead of love these days?  Absolutely not.

Because you think no one else will? Maybe doing it because everyone deserves ‘ to live with dignity’?   That never entered my mind. I wanted to do it, and I still do. But I'm at the point where I have to decide if it would be better for both of us if she were in a facility. If I can get enough out of this course, that will allow me to do it without harming my health too much, I'll re-evaluate my decision on that. Possibly I now have "Fool's hope", but that's more than I had last week. I just have to put in the work, and get the result I'm hoping for.

 

Quilting brings calm

Ed- wow.  I was actually asking the questions rhetorically.  Never even thought about you actually answering.  I hope I didn’t offend you by asking.  Interesting that the question is part of your caregiving class.   Good to know that you weren’t asking due to having a rough time.

Crushed

Victoria2020 wrote:

Crushed wrote:

  Family can be terrible , facilities can be terrible 

 

  

Crushed --been reading your posts since 2017 -- you've been lashing out a lot lately. I hope you can  get support that works  better for you , none of this is fair or pleasant but being stuck on the anger stage is causing you to lose out.

 Nothing can take away your magical love and life with your wife but finding acceptance of the situation , in  whatever form ,does give peace and the chance to get personal growth. 

Wish you well. Truly.

 Thank you very much for the kind thoughts 

 There are only a handful of issues that send me through the roof here.  
but I will try . 

 

I have 5 wonderful grandchildren  one of them is disabled  by a chromosome  deficiency.  DW looks as lovely as ever but there is no cognitive functioning.  My sister's grandchild in Texas is Transgender so they may have to move out of state for her care.  

 

etc

DrinaJGB

We were hurled into this realm on one shocking Saturday morning in 2010 when DH was life-flighted to TMC Houston. On day 2 he was placed on life support. I talked to him every day for weeks not knowing if he would ever survive much less awaken.

  I vowed to do anything to care for him if he did survive. I had no idea how hard it would be, but I am still here caring for him.

  I have seen some shoddy and even life-threatening care over the years which only enhanced his chances of death. I have discharged him early from despicable conditions after hip surgery to have his PT and OT come to the house instead. He spent 2 weeks in ICU again (after initially spending a whopping 4 months in facilities before discharged home)- for altered mental state from a prescribed drug that he never should have been prescribed.

SO when DH finally and miraculously emerged from that altered state he could not speak because of the trach. I handed him a piece of paper and asked him if he wanted to say anything to just write it down.

He scribbled one word "help".

I told him I would always be with him and look after him and that we would fight this battle together.And that is why I remain. It has not been easy and at times I feel like bashing my head against a wall, but I try very hard to find ways to cope. In reality I know there may come a day when I can no longer care for him, but we will cross that bridge when we get to it.

Sometimes I feel like Maggie the Cat in Cat On A Hot Tin Roof who says when she has described herself as feeling like a cat on a hot tine roof--- when asked what Maggie the Cat cat is doing on that roof, simply answers:

  "Just hanging on I guess---long as she can."

dj

Sligo177

  I never thought about not helping him.  We've been married since 1975.  He has always been there for me, and I for him.  I love him, I don't want him to be scared about me not being there - but I am not closed to the idea of placing him in MC if that becomes necessary.  Today happens to be a day where I can see it coming.

  I want him to be happy, and safe.  As long as I can do it, I'll keep him home, with help.  I know I will miss him so much when he's gone.  Even though he's not really him anymore, I hang on to those traces of him.  Long answer, I know. 

FTDCaregiver

Tough to put into words, for me it's like my wife and I have grown into one person over the years, when one hurts, the other hurts as well, when one if down, the other comforts and supports.  Though the disease has changed our situation profoundly, and as she fades, it hasn't changed that same feeling I have as we are "one"even through the craziness of our days.  Strange journey but home is where the heart is they say, and my heart is with hers and hers with mine. I watched my dad care for my mother as she declined.  After his death within 3 months of hers, us kids fumbled through his love letters to her when they were so young, and he was away in the military.  A constant theme appeared in all of them, for him, my mother was "home".  Home is where his heart and to him my mother was home for him, where he needed to be and longed to be. The last word he said in the hospital bed after stricken with a stroke, was "home".  Us kids knew what that meant, it was time, we brought him home in hospice to die a few days later.  I guess for me, my wife will always be home...and that's where I want to be.

Stuck in the middle

This is a real good question for someone starting on this road, whose LO has only recently become a person in need of care.  If a caregiver can't come up with an answer, now might be a good time to begin exploring alternatives.

Gig Harbor

I don’t see Crushed as lashing out except when it is suggested that the best care is care at home. Care at home is not always possible. He sounds like he has made sure his wife is in a lovely facility and he visits her daily. He is doing his best to honor her wishes and make sure she is well cared for. Of course sadness is always present but I don’t sense anger.

Ed1937

Quilting brings calm wrote:

I hope I didn’t offend you by asking.  

Are you kidding me? Definitely not offended.

Old89

This question has been on my mind recently.  Until a few weeks ago, I would have echoed the sentiments expressed by the people who continue to provide personal care at their home.

Then, my wife of 47 years started describing me as a brother who was living off of her money in her house and she wished he(therefore I) would find another place to live.  She has asked me to leave the bedroom seemingly because we are not married as there is no other reason.

This is a tough one for me and I do ask what is the motivation other than obligation and commitment to continue to be the one to provide personal care.  I will always see to it that she is cared for and my few visits to even very good - at least expensive  memory care facilities have been sobering, not so much about the facility but the ravages of this disease. 

I think how with a physical disability when you stay by a beloved's side to the end, you still have  relationship and they perhaps even recognize and appreciate your support, sacrifice and commitment. 

I now feel that it is all sacrifice, lonesomeness, and isolation, is on behalf the person who meant the most to me in the world and from whom I was inseparable, and no longer knows who I am or what I do for her.  I feel terrible shame and guilt because I wanted to believe I was capable of unconditional love.  And now I ask what is the motivation to keep her home likely until I die, assuring I will know no other life and she is likely not aware of the difference between my care and that of strangers.  I hope someone has had and  can share their thoughts about this. 

piozam13

I did it - did my best.  I had no better alternatives at that point in time.

Rennbird

Corinthians: But now these three remain faith, hope, love; but the greatest of these is love.  Love of another is a choice.  It isn’t passion.  Passion fades.  It isn’t even DNA.  It is recognizing the scared in another human being.

In my opinion, placing someone in memory care is not a failure of love. It is a practical solution to a very confusing and threatening situation.  We each have gifts that we bring to life, but they are not the same gifts.  My husband was in memory care for two years and I found a wider group of people to share with, support, and encourage.  There are many different paths and each has its blessings.  If we as caregivers do not find ways to care for ourselves, we can easily be destroyed by the Disease.  As they say in the military, collateral damage.

amicrazytoo

I almost divorced my DH when the symptoms began, I did not have any idea we were headed into the dementia zone. I persisted to keep the marriage together. Then when I finally realized there was something wrong, through no fault of his own, my love grew and deepened. Through those very difficult days, months, years, I thought for sure I would die first, due to the stress alone. I could not leave him, he had no one to care for him. His only sister refused to take him for a couple of days so I could get some respite. Now in hindsight, I see how deeply I did love him, even through the most difficult times.  They say there is a very fine line between love and hate and that is so very true. Yes, I hated him at times, but just for a moment. Then I hated the disease and knew that was my enemy. I feel for everyone who has to deal with a loved one suffering from dementia. I wanted to place him toward the end, I didn’t think I could keep going. He died in his sleep, right by my side. I wouldn’t have it any other way. I miss him terribly. Each person needs to decide what is right for them. I have respect for those that do place their loved one, I can’t imagine how hard it must be, but if it benefits the person suffering, if by nothing else than giving the caretaker a chance to live, thereby giving a them an opportunity to love their loved one again. God Bless you all in the trenches now, you are not alone.

Sorry, didn’t mean to ramble on….

David J

I did not read Ed’s question as “why are you caregiving at home”.  My wife is in MC, but I am still her primary caregiver. I am in charge of my wife’s care, but now I don’t have to do everything myself; I have help. I still toilet her if she needs it while I am visiting. I change her if she has an accident, I help her eat, and I walk with her when she can’t keep still. I don’t cook her food, clean her room, or get her up and showered in the morning. But I’m still in charge. 

Now to Ed’s question of why.  Many of you said it’s your love for your spouse. Of course I love my spouse, in some ways more now than ever, but it goes beyond that. Somewhere along the 47 years we have been together, we became one person, or maybe more accurately, we each became half a person, only whole together. I care for my wife because she makes me whole, and I am half a person without her. 

Arrowhead

Arrowhead

I tried just posting the picture but it was too small. I hope this is better.

toolbeltexpert

OK arrowhead that must be my sign. I just saw the comic strip you posted I have been contemplating making Mac and cheese. Pray she does get mad.

toolbeltexpert

Woo-hoo I went to the kitchen and just starting cooking,dw came out and asked what I was doing,I said making supper,she said call me if you need my help. Yikes she kept coming out with little problems she needed me for,really she was checking up on me. Well it's in the oven baking. I love Mac and cheese using her recipe. This is a big deal for me that she let me do it, don't know if I won't pay for it later everytime I eat it. I'll worry when we cross that bridge. I am getting sick of fast food.