Please don't wait too long.

RNS

I haven't posted a lot so I'll begin by giving history.  My 88 yr old DH is 20 years my senior and has vascular dementia  and ALZ.  It began 8 years ago with a brain injury caused from a fall that probably was caused by a stroke.  His care is relatively easy compared to what many of you are going thru.  He doesn't wander but fairly mobile, sleeps a lot, doesn't cook, doesn't exercise, mostly continent, eats mostly ice cream with a protein shake added,  and speaks a small amount.  I would say he is early stage 6 in most symptoms. I am 68 and very physically active and social.  I know you can see where this is going.  I am totally tethered to our home.  Our children started telling me 2-3 years ago that I had to get some help.  My response was : he's easy and I'm doing fine.  Until I wasn't.  I now have a wonderful caregiver that comes 12 hours a week.  He showers, eats better, walks a little, changes clothes, brushes, teeth, shaves, etc. for her.  I am so fortunate to have her.  But...I'm not feeling better.  I am numb.  I have little emotion for anything.  I do have one hobby that I'm enjoying and love the women that are involved.  I am behind at home on everything.  I have gained weight and don't sleep well.  I am taking 5 prescription medications that I wasn't taking 2 years ago.  I visit with a therapist weekly.  The point is... I waited too long to get help.  I know I will eventually recover but I could have prevented this state in part by getting help earlier.  I'm writing this to encourage anyone caring for a LO to seek help sooner than you think you need it because, trust me, you need it now!

Gig Harbor

I am where you are and I just finished up the paperwork to place my husband. I feel like I am drowning. The hours, days and weeks stretch out with no change in sight except that he will get worse. He is 82 and I am 71 and I want a retirement after doing everything for him for the last 10 years. It sounds selfish but there it is. Good luck on whatever decision you make.

RNS

Gig, in my mind I have had two conditions that should occur before I would place DH.  I always thought that he would have to have bowel incontinence and not know me.  I am not sure if he knows exactly who I am.  He calls me mom all the time.  He does know the rest of our immediate family.  I am now wondering if he will ever have those symptoms.   This disease is so cruel.  I think you are strong and brave.  I hope your DH's placement goes smoothly .  I keep telling myself that I am the only one that truly knows what I go thru.  The same is true with you.  Good luck.

Ed1937

RNS, glad to have you back. I fully agree that seeking help early is the best plan to follow. My wife was pretty easy until she wasn't. Our kids have been telling me I need to place her. I finally did that 1 week ago. Now I can go grocery shopping, then if I want, I can go have lunch somewhere, or go shopping at a different type of store. I don't have to hurry home because she needs me. 

But things are different now. I don't feel as though this is my home now. With her gone, it is just a roof over my head. It would be very easy for me to say I'll pick her up, and bring her home. But even though she told me she would be good, and not do anything bad, I know I can't bring her home  no matter how much it hurts. And it does hurt like hell.

RNS

Ed and Gig, thank you for your kind replies.  I'm so sorry we all have reason to be in this group together.  I have never felt so alone in my life.  I feel even more alone than truly being alone.  I know everyone here understands.  I read everyone's posts every single day and try to take it one hour at a time.  I have read the statistics about many caregivers dying before their LO but never truly understood until last week when I thought I would become one of those statistics.  I'm not suicidal just empty. I am depleted.  Yet, we all get up every day and hope for closure.

Gig Harbor

RNS another reason I opted for placement is that the only family I have in the area is a daughter who works full time and has teenagers. If I got sick and couldn’t be at home friends could step on for a few hours but my daughter would have to orchestrate placing him somewhere. Very likely it wouldn’t be in a facility that would have been my first choice. The stress and worry can be avoided by placing him. I feel depleted like you do and even though he is still continent it is time.

Sligo177

RNS,

Thank you for posting and updating, you have done so much for your LO for the past 8 years - that is a long, long time and what you have been doing for your LO is hard work.  God bless you, and all the others here who are unbelievably strong.  I have a DH who is probably stage 5, needs help dressing, tends to shadow me, up a few times every night, same as a lot of others' experiences.  And I see, with both admiration and fear, what others contend with as things progress. I have two helpers now as of last week, so instead of 7 hours a week I have 13 hours of help, thank God for that!  My kids came up with the extra person because they know how hard it is.  Yup, we have to take care of ourselves RNS, I am so glad you have help and I hope you can find more.  You need a social life, I know I do.  

CStrope

There are two things I often say to people that ask me how I'm doing, 1) I've become a Stepford Wife, I have no feelings or opinions of my own.  I merely exist to make DH not be angry, and taken care of.  (notice I did not say  make DH happy, he's not happy, I'm not happy)   2) I often tell people that I live in a world of grey.  I can't laugh or giggle, because it makes DH angry, and I can't be sad because he doesn't have the capacity to care about my feelings.  So I just live in a world of grey.

It's been less than 2 years since his diagnosis, but he was already at a 17 on the MMSE at that time.  I not only notice all the changes in him over those 2 years, but also the changes in me.  It scares me more to lose myself than to  lose him........I know that sounds terrible

Vitruvius

CStrope wrote:

It scares me more to lose myself than to  lose him........I know that sounds terrible

CStrope,

I doubt there is a single person on this forum who thinks this sounds terrible. It sounds sensible to me to be concerned for your own welfare because we all know how essential it is for caregivers. I chafe when people tell me to "take care of yourself", because they're basically reinforcing the fact that no one else is going to take care of me. Yet here I am telling you to do just that.

Having dementia is no picnic I know, but I believe it takes a greater toll on us caregivers.

Kenzie56

My MIL lived with us and had Lewy Body Dementia. (I was her caregiver prior to being my husband's caregiver because he worked). We placed her in MC when her behavior got so bad and my DH started showing symptoms of MCI. It was just too much. She passed 18 months after placement at the age of 95 and was never incontinent. We waited so long to make the decision for my MIL because I knew I needed to save money for my DH down the road. Thanks for the post! It is so true that you think you are fine until you aren't. DH started receiving in home care last January. That certainly helps get me out 2X/week. Placement is the next step for us. I hang on to posts that talk about life after placement.  That gives me hope. I am only 66 and feel I've done two tours of duty - I need to feel alive again.

DrinaJGB

RNS-- your story reminds me of ours in many ways.

 Next month will be year #12 on this complicated journey.My DH who is 5 years younger than me suffered an acquired brain injury from a rare form of encephalitis which has ultimately lead to mixed dementia diagnosis after many years. His father died of mixed dementia, so there you have it.One cruel thing on top of another.There have been so many twists and turns in this horror story that my head is constantly spinning.

The ultimate blow during our horrific ordeal of trying to decipher bizarre and complex side effects of the brain injury was discovering his sisters had hijacked his inheritance while he was on life support.

  They didn't think he would survive because his chances were less than 20%, so I was also forced to find an attorney for him to fight those predators. They wanted more than their generous share and did not want his wife of 30 years at that time to get anything much less his daughter and granddaughter.

  We have just passed year # 10 1/2 on that issue. Thankfully, there is now light at the end of the tunnel as things begin to unwind (one sister has been disinherited by the judge for contentious behaviors to the court for many years now). But the damage has been done both financially and psychologically. I have over 9 thousand emails between our attorney and the courts.It has been a full time job on top of the full time care-giving job.

To say this has been stressful would be an understatement for sure. I am queen of everything.I have no life other than to take care of his.I have no help even though we moved closer to our daughter and her family. Sadly, they are so immersed in their own lives they have little time for us.I lost my father a few years ago who was my rock and best friend, and that grief I fear will never be resolved within me.

 Like you, I am completely exhausted. I am worn out, but can do nothing at this time because of the legal mess.I am a ghost of the person I used to be.

I completely relate to your feelings of numbness. It often feels as if I am merely sitting back and watching as other entities and people play with our lives. I am certain this will only end when one of us dies.

Take care,

dj