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Purgatory for recent full time caregivers
Posted: Thursday, October 1, 2015 3:00 PM
Joined: 2/20/2014
Posts: 294

I was a shut in, still a shut in. Can't seem to leave the house. Former Provider of 24/7 care, now stuck in this house 24/7.

Can't go into her bedroom. Don't feel like doing anything. House looks bad. I feel bad. I'll have to get a job eventually.

Wonder if computers work the same as 6 years ago?

I'm sure I'll snap out of it.

Posted: Thursday, October 1, 2015 3:31 PM
Joined: 3/19/2013
Posts: 314

300, I too was a 24/7 care giver for the past 3 years, my Joyce broke free of Alzheimer's on July 4th.
I miss her every minute of every day, I cry a lot when I see her things or pictures of her etc, But I do try to get out of the house to lunch sometimes with friends and to dinner with friends.
I have also started to go to group theappy a couple of times a month which helps and where you learn that it's a process and everyone's grief is different and it;s own time. It also must be experienced or it wont end so we cant avoid it.

Find a group there are many , and try to get out and about it does help.

I know I can't avoid my grief and Joyce deserves it, after all She was the Love of my life


Posted: Friday, October 2, 2015 2:11 PM
Joined: 11/30/2011
Posts: 2105

Integrating back into life takes steps. Caregiving is intense and for a long time, it became all encompassing. When it's over, it feels like hitting a brick wall at full speed. It takes time and steps to peel yourself off of that wall.

I always think about what my parents would say. I know my mom would not want me to be hurting so bad. I know that my dad would say that life is short, good health is the most important thing, that's what my dad would say to me when he was living. I think our loved ones would feel bad for us if they knew how much we were hurting. After this experience, we realize how precious life is, how short it can be, and how it continues on.

Getting back can feel overwhelming and I think we all need a little help with that.

I found it helpful to get grief counseling, or joining a support group to be around someone and others who understand and who have experienced what you have. I read books on grief and that helped to make me feel normal.

Try and think of the things you used to do that you enjoyed. You deserve to do those things. Little by little, day by day can things can get better. Will you ever forget, no, you will not, you can't forget someone who was so much a part of your life and so important to you. But you can pick up and take care of yourself, and keep them in your heart all at the same time.

This disease takes away so much, don't let it take any more from you than it already has. You are here, you are living and you deserve as much good as you can find. Small steps. Make a list of things you want to do, feel you should do and chip away at it, little by little. It helps the day go by, it helps you to feel you're doing something for yourself.

Grief takes a long time, it doesn't ever go away, but it does soften, it creeps back up and then rolls back again. But it is possible to feel lighter again and to enjoy. I really think our loved ones would want this for us.

p.s. Computers are changing all the time, but what's good is that a lot of community recreation centers and some senior centers offer classes. That might be a good thing to do as a refresher, it can get you out of the house and out with others. It can help to do that, to get moving, to have something to look forward to. If you like to read, go to a bookstore or library and grab a book, that helped me, too. To get lost into someone else's story. Treat yourself to something special. Take a walk out in nature. We sometimes forget what we enjoyed doing before. Reconnect with those things, small steps at a time can make a big difference. Take care.

Posted: Saturday, October 3, 2015 12:35 PM
Joined: 2/20/2014
Posts: 294

Thanks Leland and KML!
Posted: Saturday, October 3, 2015 2:10 PM
Joined: 7/21/2014
Posts: 1164


I lost my husband just over a year ago. Life was a blur of tears and hiding for a long time. I have a small farm and animals to take care of, so I did everything that needed to be done, but didn't venture past my property line. After about 6 months, I started to get out a bit with friends. Even met a man that was interested in spending time with me. About 3 months ago, a friend told me that I was radiating sadness. I couldn't believe I was infecting people around me.

I had a real heart to heart with myself and the ghosts (I also lost me 13 granddaughter to suicide shortly after my husband passed) that live here.
We all decided it was time to either live or die. I resolved to live. I am not young, but I am not old. I started to ride my horse and go back to the mountains we loved. I just got home from a solo trip into the wilderness with my horse, 2 mules and a dog. 2 nights totally alone 15 miles from the nearest road was a good thing.

I don't know if anything will come of my gentleman friend and I, but whatever happens, I know that my LO's would not want me to be spreading sadness. I will live my life in honor of the love I had. Leanne

Posted: Saturday, October 10, 2015 1:33 AM
Joined: 12/15/2011
Posts: 4122

Lost mom in June- receiving bereavment therarpy from hospice- guess i need a new nomral but still lost not knowing what that is-i force myself to get out of house 1x per day but it is as late as 3, 4 or 5 p.m. maybe to grab a coffee or buy a few essentials and its exhausting

Posted: Sunday, October 11, 2015 3:55 PM
Joined: 2/20/2014
Posts: 294

Thanks everybody.

I will have first bereavement counseling visit on Friday.

The phone intake was easy and I feel better taking a step forward.

Posted: Monday, October 12, 2015 11:55 AM
Joined: 11/30/2011
Posts: 2105

300sun and Bela:

Good for both of you. It takes time, but you are taking steps and moving forward.

Posted: Monday, October 12, 2015 4:08 PM
Joined: 10/6/2012
Posts: 924

KML, thanks very much for your post. I do feel that I am peeling myself off a wall, such an excellent description! I was a caregiver to my husband even before the Alzheimer's. He lost his vision after our marriage so I was responsible for driving, bill paying, etc. We were always together so it's especially hard not to have my buddy with me.

Hugs to everyone, Debra.

Posted: Tuesday, October 13, 2015 11:35 AM
Joined: 11/30/2011
Posts: 2105


I feel for you, the loss of a spouse/partner is so different than losing a parent, both are very difficult, but the connections are so different. We have expectations of outliving our parents. Our spouses, we expect to have an equal life duration with. So it very hard and I can empathize with you.

But you are moving forward and making efforts to do that and you will find joy again, and you will hold what you had with your husband in your heart always. All these facets of life have a way of working and smoothing out eventually. Take care

Posted: Wednesday, October 14, 2015 10:36 PM
Joined: 2/20/2014
Posts: 294

Seeing a psychiatrist next week to evaluate for meds.

See Hospice counselor this week.

Went to my Alzheimer's support group to inform Mom had died. I hadn't been in 3 months, but I needed to let them know.
I guess I graduated from the support group.

Posted: Saturday, October 24, 2015 2:41 PM
Joined: 10/24/2015
Posts: 1

Lost my mother recently on Oct 16th 2015 to Alzheimer's. I count my blessings that I could care for her in the end and to her passing. It's the disease I have to deal with those long hours and days I'm left with the pain and suffering. That hurts. I know she's in a better place but that doesn't stop the pain the family is left behind. Would like to connect with others on this disease who are where I am at for emotional support. I want to be involved to stop this disease and for a cure so our future for not just me but my kids too.
Posted: Sunday, October 25, 2015 9:25 PM
Joined: 2/20/2014
Posts: 294

I am breaking down. Emailed the doctors this weekend. Horrible anxiety, sleeplessness, pain in my foot and back and chest.

I didn't expect a breakdown. I hate the desperation and hopelessness. We have two dogs and I struggle to care for them.

Posted: Monday, October 26, 2015 11:21 AM
Joined: 4/22/2013
Posts: 842

300Sun, you said that you had graduated from your Alzheimer's support group. I know that feeling - and at the same time it's like we need that group more than ever because they are the ones that understand us the most. They have become our circle of friends - almost exclusively. But just so you know - you haven't graduated from us here on the board!! We all know what you're going through. We've all been there, are still there, or are just getting there TOGETHER! I find myself browsing the boards silently at some of my lowest times and finding strength just knowing that there are others expressing my own feelings. Sometimes I write a long vent of feelings and emotions and then close the topic without posting it. Somehow just getting it down in writing helps - even when not posted for others to read. And I don't like putting it in a journal for someone else to find and read after I'm gone. These are my feelings - private - understood only by those of you in this same club membership. The past two weeks have been very hard for me for various reasons, so here I am. Putting my voice back into the boards. Giving therapy to myself by hopefully supporting others. Oh...and I spent quite a bit of voice screaming to the winds in my car yesterday afternoon. That helped everything to feel better but my throat. Hang in there - one step at the time. One moment at the time. To not make it through this valley would be to allow ALZ to take more than just my husband and I REFUSE to let him have another person if there's anything I can do about it! Grief is a burden that doesn't go away, but we eventually get stronger and better able to carry it.



Posted: Monday, October 26, 2015 11:48 AM
Joined: 10/6/2012
Posts: 924

Rhosarjo, I totally agree with you! There were so many days when taking care of my husband was like hell on wheels. At this point, there is no way that I am going to let this disease continue to take me down. Alzheimer's had it's turn with me. From a positive perspective, I believe that this experience taking care of my husband has made me a stronger, more patient, more loving person. However, I've got to work really hard to make sure that it doesn't continue to suck the life out of me. Hugs to everyone! Debra.