Alzheimer's widow

[v958984b]

My wife was diagnosed with Early onset Alzheimers 5 years ago.  I was a 24/7  caretaker for 5 years.  She is now mid to late stage 6.  She went into a memory care facility 2 weeks ago. She no longer knows who I am to her.   I feel like the character from Shawshank Redemption who has no idea how to make it on the outside.  Everyone tells me I need to make a life , but `how do you restart a life?  I am a retired sucesssful professional.  No finanical worries.  If it wasn't for my children and grand children I could live anywhere in the world.  Just wondered how people do this.  

[JaneCares]

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@v958984b wrote:

My wife was diagnosed with Early onset Alzheimers 5 years ago.  I was a 24/7  caretaker for 5 years.  She is now mid to late stage 6.  She went into a memory care facility 2 weeks ago. She no longer knows who I am to her.   I feel like the character from Shawshank Redemption who has no idea how to make it on the outside.  Everyone tells me I need to make a life , but `how do you restart a life?  I am a retired sucesssful professional.  No finanical worries.  If it wasn't for my children and grand children I could live anywhere in the world.  Just wondered how people do this.  

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Hey there,

It's only been a couple of weeks, or by now, a month. And you've just survived Thanksgiving. I trust your children and grands welcomed you by yourself for Thanksgiving. That must have been tough, and maybe a little bit wonderful.

You've received awesome advice, and here's some more. Reach out to old friends whom you haven't had time for in the past 5 years. Go to a movie, sign up for a Western Swing Dance class. Keep thinking of things you might like to do, make a list, try to do one a week. Any old hobbies you've neglected? Anything you want to do that you've always wanted to do? The proverbial bucket list?

At the same time, patience. Much patience with yourself and your heart. Menfolks are sometimes not the best at knowing how to be friends with other men. Women do all the social connecting and you just have to show up. Your wife then needed you big time. Now, here you are. You are healthy, you have means. Volunteer. See how things go. experiment. Maybe Spring 2018 will be a blossoming of you, too, as well as of green life in this northern hemisphere.

Talk us about how it's going? How was Thanksgiving?

Jane

[v958984b]

Well let's see.   I went to Germany to meet old friends.  Gave a lecture in Munich.  Went to Christmas Markets .  Came home, had a wonderful Christmas with both daughters and grandchildren.  Took Christmas lunch over to memory care  and had Chistmas with whole family.  She smiled even if confused about the young children (her grandchildren) .  I hurt my knee in Germany, so I'm lame for a few weeks.  My wife was a lifelong photogapher and I've been going through pictures.  I'm always struck by how lovely she is. I asked her to marry me on Christmas 1972.    She became world famous in her medical field. We were partners in every possible way.  I feel like half a pair of scissors.   

[DrBarryJJacobs]

I appreciate your raw honesty. Of course you feel like half a pair of scissors. Part of you is gone. You will grieve for a long time. In my clinical and personal experience, 1-2 years at minimum. And your wife's situation is one that family psychologist Pauline Boss refers to as an "ambiguous loss"--one in which she is mostly gone mentally but still physically present, making the mourning process all the more confusing and conflicted.

Another psychological idea that may be helpful to consider is that of "survivor guilt." I have worked with others in your circumstance who couldn't allow themselves to enjoy their new life without feeling that they were somehow betraying their spouse who was unable to feel real joy any more. They would then always hold themselves back, at least a little, from really rejoining life.

I think others have given you good suggestions for ways of reconnecting to others and beginning to find the part of yourself that may have been dormant for all your married years. But all of that may also be premature. I would just recommend being patient and lowering your expectations for feeling well or comfortable or on track in the near-term. Allow yourself to feel whatever you feel. Journal a bit, if you like to write and reflect. Reflecting with others is generally very helpful. Trust that time does heal--or at least it produces some transformation to usher you into a new phase of your life and a new sense of yourself. I wish you much luck on this uncertain journey.--Barry Jacobs, co-author of AARP Meditations for Caregivers

[AARPTeri]

@v958984b  Welcome to AARP's Community.

You certainly are in a tough spot!  We are so glad you reached out here to get suggestions and connect.  There are many people on our forums that have experienced similar things.  @Epster has provided some great advice and there are also articles on AARP.org that may be helpful.

https://www.aarp.org/home-family/caregiving/info-11-2012/managing-caregiver-emotions.html

and 

https://www.aarp.org/caregiving/life-balance/info-2017/relief-guilt-caregiving-ends.html

Teri

[Epster]

Hi @v958984b and welcome to the online community. I hope you will find interesting people, fascinating topics and understanding hearts here.

I have not gone through what you have gone through. I have, however, had to start my life over a few times. Here's what I can say about the road forward: first you grieve. It's OK to grieve someone who is lost to you but still alive. Go ahead and let yourself feel everything. Find someone to talk with about it if you like. A pastor? A friend? A group at the Memory Care facility? Maybe an online suppor group? 

Here's another idea: During one particularly traumatic reinvention I woke at 4 AM each day, went to the computer and typed out prayers, poems, anger, fear, whatever it was that was in me: I laid it all out in a Word document. Then, when I was done spilling my guts, I deleted the day's missive. This process allowed to to organize my thoughts, and to both allow myself to be traumatized and to challenge myself to pave a path forward. 

I wish you peace.

Epster

[robinmarie05156]

im dealing with both my parents having alzheimers i dont know what direction to go Accept sit on the floor an cry,why is this happening..I dont want them driving its killing me inside..I told their doctor but he just says if they get lost then its time...I dont want that to happen..this whole thing is killingme inside..

[JaneCares]

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@robinmarie05156 wrote:

im dealing with both my parents having alzheimers i dont know what direction to go Accept sit on the floor an cry,why is this happening..I dont want them driving its killing me inside..I told their doctor but he just says if they get lost then its time...I dont want that to happen..this whole thing is killingme inside..

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Hi Robin Marie,

It is heartbreaking, I'm so sorry. Did you just get the diagnosis for one or both? 

Are there other family members you can share the burden and the sadness with, as well as the many tasks that lie ahead? Misery shared is misery  halved. Siblings, cousins, anybody? 

Their doctor sounds a little cavalier. Do they have cell phones? If they get lost while driving, i think there is an app that you can put on their phones that you can then monitor in case you don't hear from them. Do they live with you or you with them?

I'm sorry i'm so full of questions, but i want to help you think through what will help all of you, so when your heart stops aching enough for you to think a thought, you'll be ready to get something done. Do they have any legal stuff filled out, that would, for example, give you power of attorney for health decisions, and for finances? Do you know what their income is so that you can help them hire some help?

I do hope you have some sort of community of family and friends that can support you through this. Please write some more and know that there are very smart people on this site who can share their experiences, and soon you'll be an expert who can help those of us who are still learning!  

We are here! Please write back!

Jane

[robinmarie05156]

I live in VT an they still live in their home dad is soon to be 90 I drive each weekend to CT to check on them. I have a brother who lives there in CT but says theres nothing I can do. Needless to say Im alone. My dads stubborn and wouldnt accept any help. Last week he was snowblowing the driveway. My dads not computer savy. My mom has a cell phone but will she call if she got lost?? I tell her please dont drive.. I love you...she says i think you love me to much?? who says that??I dont think my dad will allow anyone in the house.Ive discussed this with my mom she said Im not ready yet maybe another year.. But she doesnt remember 2 minutes ago.. and my dad is right behind her...Im scared..I live 150 miles away..watching this alone is heartwrenching im taking meds so I dont have a heartattack

[JaneCares]

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@robinmarie05156 wrote:

I live in VT an they still live in their home dad is soon to be 90 I drive each weekend to CT to check on them. I have a brother who lives there in CT but says theres nothing I can do. Needless to say Im alone. My dads stubborn and wouldnt accept any help. Last week he was snowblowing the driveway. My dads not computer savy. My mom has a cell phone but will she call if she got lost?? I tell her please dont drive.. I love you...she says i think you love me to much?? who says that??I dont think my dad will allow anyone in the house.Ive discussed this with my mom she said Im not ready yet maybe another year.. But she doesnt remember 2 minutes ago.. and my dad is right behind her...Im scared..I live 150 miles away..watching this alone is heartwrenching im taking meds so I dont have a heartattack

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There's nothing you can do? Your brother is wrong, and he has no right to abandon you AND your parents. There are several things you can do despite your mother's dementia and your father's dementia.

At the same time, i am worried about YOU. How can you take care of yourself through all of this? You sound so distressed. This is a distressing situation, but you are not going to be able to help them if you are nearly incapacitated by worry. What can you do for yourself? Do you have a therapist? A minister? Someone you trust? Some venting and unloading needs to happen. Even a best friend. I hope you are getting some support because it sounds like you really need it.

Hard as it is to think this way, 'you can lead a horse to water but you can't make it drink.'  Your job is to offer help to your parents, and your father's job, even if he is somewhat impaired, is to let him choose what he does. And let the chips fall where they may. I'm mixing my metaphors here, but even if Adult Protect Services swooped in and took over everything, the social workers of APS cannot force your parents to do anything. The trick, the real skill of intervention here, is to offer services in such a way that the person who needs the help isn't scared, isn't insulted, doesn't feel like his independence is being taken from him. No small task. I was a geriatric care manager, and spoke through a locked door to a paranoid client for weeks until she opened the door. 

What i'm trying to say is that something will give, something will befall your father or your mother, and then you and your brother will be able to make some changes on their benefit. Your father will have a medical issue, or your mother will, and you'll have a hospital and a team, and a social worker/discharge planner to work with, and some leverage because... someone broke a hip... one of them had a heart attack (NOT YOU.)....

Before disaster truly falls, your brother and you can make an appointment with a social worker at the area agency on aging that serves your father's area. If they are in Connecticut, there's an excellent tax base there, there will be good services. Find out which agency by typing in the zip code of your folks' home into eldercare.gov and call them up. Make an appointment. Drag your brother. Find out what you can do to intervene. 

1. Take care of yourself

2. Meet with your brother and go to a social worker who knows the laws and services of Connecticut.

3. Prepare and wait for the inevitable disaster.

Does this make sense? Please write back. I'm sorry it's taken me 'til saturday morning to reply, i was hoping others would have advice, but listen to me and move forward, okay?  And write back.

With all sincere respect and caring for YOU,

Jane