Loss Of Partner Due to Dementia

[Becca25]

I have been in a 43-year-old relationship through good and bad.   My partner now has dementia and can no longer be there for me after all these years.  I feel very alone and lost.  I cry through the hurt and loss every night.  I need to prepare myself for when he passes because I do not want to fall apart.   This is the first time in my life that I have no one to turn to.  

[widower2]

I am so sorry. I had no one to turn to after my loss either. I hope this site can help - it did for me. It's a great group of people who "get it." You might also want to try checking support groups for people going through something similar. Local and state agencies sometimes have such things. 

[Gail 8588]

Becca25, 

I am so sorry that your partner has dementia and that you are so alone in dealing with this loss. 

There are some good YouTube talks about dealing with anticipatory grief.  I'd link to them but I am not that proficient technologically to do that.  Kay may respond to  with some. She is a wiz at linking to helpful information.

Take one day at a time, hold his hand, touch his face. All of us here long to do that one more time with our lost loves. 

Don't worry about falling apart now or after he passes, you are allowed to grieve in your own way. 

Gail

 

 

[widower2]

Bill Rudy

Copied from a friend...hope OK to post here/FWIW:

“If I get dementia..."

 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I want my friends and family to embrace my reality with me. If I think we’re visiting someone for dinner, or something happened that didn't, let me believe those things. I’ll be much happier for it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t argue or worry about correcting me with what is true. It doesn't really matter and will probably just upset me further.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and I am not sure who you are, do not take it personally. My timeline is confusing to me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet as much as possible to maximize me still feeding myself.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I am sad or anxious, hold my hand and listen. Don't try to "fix" the situation because you can't. I don't need that. I just need support.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I don’t want to be treated like a child. You can't be sure exactly how much I can or can't grasp and even in my state, it can be insulting. Talk to me like the adult that I am.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I still want to enjoy the things that I’ve always enjoyed as much as possible. Help me find ways to take walks, get out, read, visit with friends, whatever things that are familiar to me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, encourage conversation, but don't worry about it what it is. Just roll with whatever I'm saying as if you understand. If I say something that I seem to find happy or funny, smile or laugh with me. If I look serious or thoughtful, be thoughtful with me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and I become agitated, take the time to figure out what is bothering me and do something about it if possible (or appear to, if it's imaginary).

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, treat me the way that you would want to be treated.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need. I don't have to have a "regular" schedule.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t EVER talk about me as if I’m not in the room, or let anyone else do it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose the best new place for me to live as possible.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I live in a dementia care community, please visit me as often as you can. Yes, you have your life to lead, but there is no worse feeling than feeling forgotten.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault. Again, just roll with it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, make sure I have my favorite music playing as often as reasonably possible. Music touches people on a level deeper than conversation. 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I like to pick up items and carry them around, help me return those items to their original places (eventually!).

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t exclude me from parties and family gatherings. Just make sure people get the situation. 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, know that I still like receiving hugs or handshakes. In fact, I need them now more than ever.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, remember that deep down, I am still the person you know and love. I just can't show it like I used to.

 

 

[RichS]

All of us on this board are sorry for you and your partner having to experience all of this. Know that you will find comfort and sympathy from everyone here during this difficult time. Please continue to post here. WELCOME!!

[KayC]

I am so sorry, I went through that with my mom, aunts, uncles, and more recently my sister (I was her caregiver).  It's the hardest thing in the world, to know that's their voice but it's not them speaking, it's the dementia.  It's also hard feeling like we're losing them bit by bit.  I am doing Keto for life to stave it off, staking my life on it.  Time will tell.  My heart goes out to you, the pain you must be in!  I hope you have a good support system!  There has to be some support system for dementia' families. 

If you want to message me your email address, I'll send you a book on dementia.

Usually I give this to those just having lost their spouse, but in your circumstances, I think I'll give it now...keep coming here and reading/posting, it helps.  You're not alone, you have us here with you.

Grief Process

This is not a one-size-fits-all, what strikes us one day will be different a few months/years from now, so please save/print this for reference!

I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of its own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs)))  Praying for you today.

 

[DMB]

So sorry.  Dementia is the absolute worst!  Both my mother and mother in-law suffered from this.  I think my Mom killed my Dad.  I knew things were getting bad and I would stop in a lot but one day he just had his heart attack and said that's it.  We literally buried our father, we all took turns staying with Mom until we had a suitable place for her (ha!-worst day of my life taking her to assisted living), and sold the house in a span of 4 months.  Mom died the following year.  I had great relief at my mother's passing because it was over.  She was no longer sick, and I could remember my mother, not the sickness.  I also had delayed processing of my father's passing since I went directly into caregiver mode during that year.

Shortly thereafter, my mother in-law was falling down steps and having delusions that her spouse was cheating.  Most all of the family was in denial, and I had never dealt with this sort of behavior.  You could distract her and change the subject, but some of her children just choose to keep on correcting her and would not go to her reality. This included her husband.  I called in a care coordinator which really didn't help, but it told the family and stepfamily that this was serious.  Went to a few Drs and finally we found a med that seem to calm her.  I medicated that poor woman for months.  Thanks to getting breast cancer, I got out of this caregiving mode as I had to have surgery, radiation, etc.  It may sound mean, but I was the in law.  My husband and his siblings were the responsible ones for her care.  I was almost glad to hand it all over and do no more. My husband, his sister, and I were the only ones doing anything in a very large family. It just rubbed me the wrong way that some people can do absolutely nothing.  I'm more understanding of that now, so I sort of get it.

Please do take care of yourself.  I hope my sharing is an example to you of how very important this point is.  I can't imagine doing it alone, please reach out if you need to.  I did join the alzconnected.org forum and there were some very knowledgeable people there and it did help me to get some feelings out and learn new tips on how to handle/cope with things.  You're not alone.  

[KayC]

My offer still stands, if anyone wants a copy of the book, it's short and easy to read with good tips on handling people with dementia, it helped me a lot when I had to take care of family members with it.  I gave a copy to a caregiver at my mom's dementia care center and she really appreciated it...just message me your email address and I'll send it to you, free.  When I got it, it was free, shareable, now it costs, but I'll pass along my savings and send it for free..

 

[I miss you so much]

On 4/22/2023 at 6:49 AM, widower2 said:

Bill Rudy

Copied from a friend...hope OK to post here/FWIW:

“If I get dementia..."

 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I want my friends and family to embrace my reality with me. If I think we’re visiting someone for dinner, or something happened that didn't, let me believe those things. I’ll be much happier for it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t argue or worry about correcting me with what is true. It doesn't really matter and will probably just upset me further.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and I am not sure who you are, do not take it personally. My timeline is confusing to me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet as much as possible to maximize me still feeding myself.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I am sad or anxious, hold my hand and listen. Don't try to "fix" the situation because you can't. I don't need that. I just need support.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I don’t want to be treated like a child. You can't be sure exactly how much I can or can't grasp and even in my state, it can be insulting. Talk to me like the adult that I am.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, I still want to enjoy the things that I’ve always enjoyed as much as possible. Help me find ways to take walks, get out, read, visit with friends, whatever things that are familiar to me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, encourage conversation, but don't worry about it what it is. Just roll with whatever I'm saying as if you understand. If I say something that I seem to find happy or funny, smile or laugh with me. If I look serious or thoughtful, be thoughtful with me.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶 and I become agitated, take the time to figure out what is bothering me and do something about it if possible (or appear to, if it's imaginary).

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, treat me the way that you would want to be treated.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need. I don't have to have a "regular" schedule.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t EVER talk about me as if I’m not in the room, or let anyone else do it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose the best new place for me to live as possible.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I live in a dementia care community, please visit me as often as you can. Yes, you have your life to lead, but there is no worse feeling than feeling forgotten.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault. Again, just roll with it.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, make sure I have my favorite music playing as often as reasonably possible. Music touches people on a level deeper than conversation. 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, and I like to pick up items and carry them around, help me return those items to their original places (eventually!).

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, don’t exclude me from parties and family gatherings. Just make sure people get the situation. 

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, know that I still like receiving hugs or handshakes. In fact, I need them now more than ever.

𝐼𝒻 𝐼 𝑔𝑒𝓉 𝒹𝑒𝓂𝑒𝓃𝓉𝒾𝒶, remember that deep down, I am still the person you know and love. I just can't show it like I used to.

 

 

Thanks a lot for sharing, I've loved this text

[I miss you so much]

On 4/22/2023 at 2:28 AM, Becca25 said:

I have been in a 43-year-old relationship through good and bad.   My partner now has dementia and can no longer be there for me after all these years.  I feel very alone and lost.  I cry through the hurt and loss every night.  I need to prepare myself for when he passes because I do not want to fall apart.   This is the first time in my life that I have no one to turn to.  

It's very hard, but he's still there.