I feel lost

amybp

I haven't posted on here for quite awhile.  When I first came on, I think it was 2018, everything was brand new.  "Crushed" gave me the advice to get a lawyer before I did anything else.  Luckily, I found a great elder care Attorney who told me about a local place called Memory Care.  There I was able to have a doctor who treated my husband, but they also spent time with me - assessing my stress level, giving advice, and listening to what I was going through.  They run support groups which I attended - even more so after Covid, when it became a weekly zoom meeting.

They determined that my DH had FTD.  It is hard enough to watch your loved one disappearing, even worse when they hate you for everything you do to keep them safe.  Our last visit to the doctor on Wednesday, he only scored 10 out of 30.   He had escaped our farm 4 times in the last 9 days despite my 3 driveway alerts and 2 cameras, with the Sheriff having to be called the last time because I couldn't find him. (the day before our appointment with his doctor)  The doctor said after talking with him that he is absolutely fixated on the idea that I am controlling his life, I won't give him his money, and if he can just get over the fence and get to Maryland with his family everything will be alright.  She reached out to the psychiatrist working in the geropsych unit at the local hospital and on Friday he was admitted.

I feel like a shell walking around.  Just numb.  Afraid to go inside and feel what's in there because it may hurt so bad I won't be able to stand it. 

Ed1937

Amy, I'm sorry it's so hard. Please keep posting. We can help you, even if it's just talking to you, so you won't feel so isolated. 

Have you watched any of the videos about dementia on youtube? If not, do a youtube search for "Teepa Snow", and also for "careblazers". You can get some very good tips on how to handle all the bad stuff that comes with this disease. 

piozam13

Amy - it's not easy.   DH went through stages when he had fixations to relocate. it was so hard on me.  i tried all sorts of distractions, but he would rant from the moment he got up.  i asked PCP for referrals but they fell on deaf ears.  what he did was to double the dosage of meds.

amybp

The plan is for DH to stay in geropsych unit until he can get a space in a LTC facility.  So I am now facing this loss, which feels like a death, but not, because he is still alive and I still worry about him and he is still ever present in my thoughts.  

I had talked in my support group about how I had to stay disconnected emotionally in order to be able to take care of him.  So now that his care is in the hands of someone else, the emotions are bubbling back up, starting to break through.  Earlier this month, I woke up in the morning, having just been dreaming of being with my DH before dementia - I've truly forgotten what that was like - and the dream just was so wonderful, except for waking up and having to face it was only a dream and that life with him is gone forever.  I couldn't stop crying.  When I tried to hold it back, it physically hurt, like a knife in my chest until I would cry again.  It was soooo painful.  That is what I am hiding from now.  I can't face that. I don't want to go there.  

How, how, how do you move forward?

How do you process this when it isn't over and yet there is so much painful heartache?

Ernie123

Amy. I am so sorry you are facing this torment. You must think of how to best look after yourself now that you LO is getting the care he needs. When my DW had to be placed in MC 15 months ago I was a basket case. My son took me to my family doctor the next day because for the first time in my life I felt I could not cope. She said that after the demands of months of caregiving it is normal to crash emotionally when suddenly you are alone facing this transition. She prescribed a medication for me to take as needed which got me through the first week. It is not a weakness to seek medical help for the short term to help cope with overwhelming stress and grief. Now, over a year later I still feel that empty loneliness, but I have learned to accept it as just part of my new life, not the whole of it. Please share how you are doing, everyone on this forum is here for you in spirit.

Ed1937

Hi Amy. I have always felt that many people shy away from therapy because they feel it is a sign of weakness. IMHO, seeking therapy, when needed, is showing you are smart, and not a sign of weakness. It might be a good fit for you. 

After the loss of our son, my wife went to therapy for quite a while. I think it saved her life, and I would recommend it to anyone who needs it.

amybp

Thanks - good info in the replies.

I actually called last week and set up an appointment with my therapist for tomorrow, knowing after discussions with my support group that it was time to start looking for a LTC facility.  I just had no idea he would be gone before the end of the week...so no time to mentally prepare. It was hard enough to mentally prepare for taking him in to the hospital - how it was going to work, what I would tell him, etc.  I never even thought about how I would feel afterwards...actually, no, I think I thought I would feel relief, but I don't.  Not even a little bit.

LadyTexan

Greetings Amy.

You have gotten some very good advice here. I want to reiterate what Ernie said about how to best look after yourself now that you LO is getting the care he needs. Kudos to you for scheduling an appointment with your therapist. 

Please consider also seeing your medical doctor. I suffered an emotional trauma earlier in my life. Like you, I physically hurt like a knife in my chest. I thought I was having a heart attack and that I was dying. 

A loved one had the good sense to get me medical attention and I was placed in intensive therapy. The therapy helped with the current crisis and also taught me coping skills that I still use today.

I am so sorry this is happening to you dear. I cannot imagine how upside down you must feel.

Thank you for reaching out. We are here for you. (((Hugs)))

jfkoc

I am not certain how you process or prepare. I guess I don't think you can get on top of what is happening or what getting "on top of" really is.

You are smack in the middle of a world of loss....loss of control as well as loss of your husband and the life you led as well as the life you pictured in the future. 

There is no feel good in this spot you are in. 

We understand and we all have our arms wrapped around you. Please feel free to scream, cry or just feel lost. All you really need to do is allow yourself your feelings and to keep breathing. You do not need to be brave or strong. You just need to get through each day or each hour if need be.

aod326

Hi Amy. I'm so sorry that you're in this position. It is so very hard to grieve someone while they are still alive. My DH's aggression and wandering was what drove my decision to place him last August. I did have a couple of weeks when I knew he'd be moving, although that was difficult in its own way, because I had to stay "normal" and not show my husband how upset I was.

I had coped also by detaching emotionally when I could. I found that, after a couple of weeks of placing him, I went back to being his wife, rather than caregiver. People had told me that would happen, but I didn't really believe it. That was lovely, because, honestly when he was at home, full of rage, there were times when I wondered if I still loved him.

So, while it may seem impossible to imagine, your current pain may lessen. 

Stay in touch on these message boards - very big hugs.

White Crane

Amy, you've gotten some very good replies and I just wanted to add my hugs to those you have already gotten.  I am so sorry your life is so hard right now.  Try to take good care of yourself and let us know how you are doing.

amybp

aod326 wrote:

"I had coped also by detaching emotionally when I could. I found that, after a couple of weeks of placing him, I went back to being his wife, rather than caregiver. People had told me that would happen, but I didn't really believe it. That was lovely, because, honestly when he was at home, full of rage, there were times when I wondered if I still loved him."

Nail on the head.  That is it exactly isn't it?  I'm shifting my roles.

Yes, I was the same, wondering if I would even care once he was gone.  I was at the point of always having pepper spray clipped on my belt loop in case he got out of control, and we couldn't let him be alone in a room with my 16 yo daughter because he had inappropriately touched her.  This helps me tremendously to understand why/where all this emotion - thank you!

SSHarkey

Amy, many of us here do understand. You’re not alone with this group. Reading your story was an exact replica of my brother’s experience with his wife. He’s slowly coming through and finding himself again, as will you. I’m glad you have than appointment with your therapist. Take you time to grieve in a healthy way. It will help you move forward. Your role has shifted to self care now.

Crushed

DW is also 68 but we have been on this road over ten years. A little over two years ago (July 2018) I realized she no longer had the slightest idea who I was or anyone else in the family.   It was like having a boulder  dropped on your head.  However it forced me to realize that I was no longer a husband since I no longer had a wife. It's not detachment it is recognizing the change.
I now have a shell of a person for whom I was totally responsible.   I take that responsibility seriously and make sure her care is excellent.  We were married in 1975.  She was 20 when I asked her to marry me. Yes I suffer all the aches of a lost love. Therapy helps. I have now lived alone for 3 1/2 years.  I have no idea where life will take me. 

Nowhere

Amybp, I understand. It is like a death. The loss you’re experiencing is real. My husband’s dementia has caused all sorts of difficult behaviors. I placed him in memory care six months again and am just now beginning to believe that he is “containable” secure, and he might have some peace. It took a major medicine change and his developing a new friendship within his second facility. I’ve lost my husband. I let him go. I had to do it for my health, our kids, our grandchildren, and my sanity. I’ve never lived alone until now. At age 65 I know he/we/I  have been too hell and back with Alzheimer’s. What is helping me with the feelings of guilt for not carrying on at home with him is to recall how angry he was with “our” situation. In his paranoia he blamed me for being too controlling, poisoning him even, and having affairs. He would search divorce attorneys and wanted to move back to Europe if only I’d let him. Alzheimer’s stole trust and intimacy.  He was not happy within our marriage. He wanted me to be the old me, even though he could not be the old he. His disease changed us both, and I had to step up and take on responsibility to keep him (and others) safe. He had zero insight or responsibility into his disease. Trust yourself. Hold onto the good years and memories you once had with him, and know that it’s not you to blame for the path he is on. It’s the f’ing disease. You haven’t abandoned him, you’re seeing to his care, but from a necessary distance. I’m learning to accept he isn’t ever going to be okay, but to value that he is safe. And if he can find a shred of peace and happiness in the present, I feel the same. He sometimes calls his new friend by my name or our daughter’s name. And in this way we are honored. 

amybp

It is good to read your stories and know that others "get it."  Thank you to all of you who have shared.  It has helped.  I am truly grateful. 

janeymack

Amy, thank you for your bravery in sharing your grief and sadness with us. I'm on the same path, just a bit behind you. We're all somewhere along this road and the reaching out for a hand, or to lend a hand, is a beautiful blessing of humanity. Please keep us posted on your journey of self-care. Hugs to you.

Jane Smith

Amy, I just wondered how things are?  (But only if you feel like talking about it.)