I searched for this item to see if this was on this site before but nothing came up and I have no idea who sent it to me so I thought I would share it. It really helped me understand some of what I feel right now. If anyone recognizes where it comes from please let me know. Get out the tissues!!
Written in 2010 by a Dementia Caregiver.
There has been much anguish over placing our loved ones and of course bereavement and grief after we lose them. There is what is called 'survivors syndrome' which is a real take on maybe a few of the many reasons we feel so much pain and remorse after placing and or death. some of the classic symptoms are' anxiety, depression, social withthdrawal, sleep disturbance, nightmares, physical complaints, along with emotional lability with loss of drive'. as you can see, any and all of these we feel while grieving after placement OR death. I have read countless numbers of many who placed their spouses and I am not too sure the placement isn't sort of a facimile to death-like feelings as well. The same feelings of, abandonment, frustration, anger, and feelings of inadequacy at placing our spouse can bring on the same grieving feelings and symptoms. Many times it's not our choice but the dementia disease that makes the decisions for us but even so we want to find guilt and blame ourselves for being the one left behind. We tend to forget we are not the ones who have caused suffering but along with our spouses suffer the consequences of the disease too. Giving ourselves the needed persmissions to enjoy life again will only come again once we release our minds from the hostage feelings Dementia places on us from the very diagnosis. Maybe understanding that it's a real symptomology and of sorts like a 'post traumatic stress syndrome' after the fact, can help us find an easier guilt free life after.
Jazzy, thank you so much for sharing. It really puts in all into perspective. Having gone through placement and death I totally agree. The only difference for me at least is that when I placed him my emotions were totally out of control and I cried all the time. Now there are not so many tears but just a deep sadness and numbness in my heart. Yes placement is a precursor to death because you know they are moving closer to it and they are no longer in the home. Getting used to a quiet house gets some getting used to and is something that I did not have to deal with after his passing because I had 16 months to get used to a quiet house. Dementia does indeed make the decisions for us and yes we do blame outselves with guilt and blame. A horrible horrible disease. God bless.
We have not yet reached the point of placement or death, but many of the feelings described are how I feel now...anxiety, depression, social withdrawal, sleep disturbance & loss of drive and/or interest in the things that I have loved to do in the past. And may I add, in my own personal case, weight gain!
This is not meant to minimize the emotional upheaval of those that have placed their spouse or have become widows/widowers. I suspect that those feelings that we have in the "during" become more pronounced in the "after". That's just my uneducated guess!
Also, I think my own brain is becoming fried! I'm meeting a friend for a late breakfast tomorrow morning....would you believe that I actually went Tuesday morning instead, sat there having coffee alone for 45 minutes, decided something had happened with my friend that I wasn't aware of, then went home. I checked our message arrangements, then realizing that I had marked the wrong day on the calendar!!! Sometimes I fear for my own sanity.....
Thank you sincerely for this Jazzy. I printed it out to refer to again and again.
Like you CO2 I cried for years after placing my husband. And like you Mim I have gained weight. I can't tell you how often too Mim I do things like you mentioned about having the date incorrect.
I do believe this disease steals part of our hearts and minds and souls. I see my husband now as a tiny shadow of his amazingly prior brilliance and presence and I too am going down that road. Parts of me have died. The last two lines of the quote you shared Jazzy is where I am going to try and put some energy.
I wish I had been the one to write thus and I appreciate all your loving thanks but if you look down the list you will see a thread put there by divvi. She was the one who wrote this in 2010. I think she really hit the main upsets we face in our lives as caregivers and I really appreciate her reminding me where I had found it. She is some special lady who has lived this as we are doing now.
mim, I feel just like you. Sleep is a thing of the past, but I can eat with you anytime. Sometimes I will start thinking, I am the one with the problem. It's crazy, he will be so postive about something, I begin to doubt my own judgement He has always been the decision maker, and I am having a hard time taking on that role.