I have returned, and have finally written a new blog that details what I have been going through. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. I hope that my honestly resonates with many of you, and you can take comfort in knowing, as always, that if you feel any of the emotions I write about, you are not alone. Although my husband is in a nursing home, the emotions of which I write are often experienced by those who are still caring for their spouses at home. Please post comments here.
Your blog really touched me as it was like I was reading my own story. I have to thank the bad weather and a few health problems that kept me from spending all my time at the LTC with my DH. I had been holding on to our life and not moving on. I felt like I had to be there with this new version of my beloved but that is not him anymore. Every now and then a bit if his former loving husband shines through but it slips away into his new world being replaced by this new person that I had become afraid of and feared for so long. It's hard to move back and forth from one of his world to the other. Not being able to spend all my time there has helped me to let go and just advocate not be his major caregiver. I guess somebody up there saw how much trouble I was having and took action. I am now able to just go for lunch or coffee break and then leave the guilt behind. We both realize this is what we have left and each day becomes better. He says he misses me and loves me but will turn nasty in an instant. That is just how it is. I miss him terribly and find meal time and watching our favourite TV shows the most difficult now, but it is getting better. Cooking nourishing meals for one is another hard one for me, but I am working on that as well.
So glad you had a good visit with your son, Joan. Just getting away from the day-to-day stuff helps so much. I feel your pain, though. I know we all say this, but it will get better, and I'm not sure we all believe that. Best to you and Sid.
Hi Joan, Glad to hear you are feeling better. I can relate to everything that you say. Like you I placed my husband the end of August. He is still walking and talking but no longer makes much sense when he talks. Our weather in Ohio has made me even more housebound than normal and am still having difficulty doing some things for myself. I visit 2-3 times per week and find that is plenty . Unless I take him out to eat or something, there is not much to talk about. He is still able to go out and enjoys that., I will take him out as long as I can. I have a hospice volunteer coming on Friday and a person from my church who comes on Wednesday. Plus my children visit so fortunately I no longer feel like I have to do all the visiting. I am seeing that the "moving on" thing or creating a single life for me will be in baby steps. I have a friend who has a loved one in assisted living and she told me it took her a year before she did not feel so burdened by the caregiver role. Each day is a step forward.
Glad you had a good visit with your son and talked out a lot of stuff.
One thing that we have said from the very beginning of this web site is "Do not let this disease claim two victims" I sure am rooting for you to find your balance. The guilt of: I could of, should of, he isn't that bad, etc.... can just eat at you. You and all the caregivers here have done and a lot are still doing a magnificent job looking after your love ones.
Hi Joan, I could have written your blog,it is so true to my own feelings. But due toa serious illness, I have been unable to visit Sonny for 2 weeks.I was worried sick about him, would he eat? would he miss me?Seems he is doing better than me,some of the staff call me every few days to give me an update.What surprised me was that some of the other residents missed me more than my DH.Had the staff calling me to make sure I was OK. I did realize I had not been taking care or eating as I should,so decided this was the time to turn my life around and do better.So the dog and I have been enjoying steak a couple times a day and she is getting a lot more attention.I guess my illness was a blessing.
Joan--I am going to speak plainly. Before your trip, you were always looking at how much Sid has lost. It seems to me that you will not heal until you can change that and look at the parts of your "old" Sid that still remain. It's a difficult transition, but if you can slowly change your point of view, it will make all the difference in your life. Somehow, I was able to do this with Steve and was still finding bits of him to appreciate right up to his death. I noticed that this is what the staff at the assisted living did--they accepted the residents as they were and appreciated their uniqueness, even in the advanced stages of dementia.
I know it's hard not to make comparisons with the person they used to be, but it really serves only to drag us down. You may want to gradually shorten the duration of your visits with Sid if you are comfortable with the care he is receiving. I visited Steve almost every day from 1/2 hour to an hour; it's still a transition now that he's gone, but would be harder if I had been there more hours.
Joan does a great job of articulating the push and pull most of us feel--the ongoing struggle between acceptance of life as it now must be, and reaching for a sense of that old connection.
It's good to note that you never fully resolve it. Even as you move toward a more balanced emotional stance, there will be moments like those that tried to capsize you at your worst.
Joan, sounds like you really got swamped. Makes me think that maybe dissociation, which was the emotional tool my psyche chose in order to survive, wasn't such a bad idea after all. May you stay on the healthier side of the balance.
Joan your comments echo parts of the graving process. The first trip out of the "nest" alone. Visiting loved one's. alone all for the first opens a whole new vista on live. Once removed from the day to day drudgery your feelings of depression and being so overwhelmed and all things positive repressed reacted to seeing the "normal'" world Welcome home
This is a wonderful site you started. There is so much information here, and so many helpful, kind people always ready to lend a hand to others dealing with this disease. I feel I’ve been helped so much already.
I’ve been following your blogs for some time, and can, I think, appreciate some of the pain you have been feeling, physically and emotionally. Wishing you the strength to keep on going.
Looks like I came in through the back door – not intentionally – and not introducing myself.
Great to hear from you Joan. As others have mentioned, your posting so echoes with much of what I am feeling. The constant push/pull of emotions and the deep depression.
You mentioned "should" be able to do many things after six months. It will be two years on Sunday since my husband went to live in a facility and I struggle daily not being able to do many of the things I should be able too after this amount of time.
I am frustrated to be mired in such a deep depression, sought professional support and do not seem to be getting better. My husband was a hoarder and I have not found the energy to get rid of all that stuff although its presence drains me.
I keep telling myself to be compassionate with me and take wonderful solace how others on this site say things will get better in time. I just hope I live long enough to experience that.
I know from this thread and several others I am not alone and I am SO grateful to know that.
Welcome back. I hope you never leave off directing this site. When I found this site after moving to MA 4 years ago with my AD. Wife, it was like finding a jewel. I had been in denial concerning her illness until then. At least as to how serious it was. I have learned more by reading your blogs and the comments of your readers than by being present at the 6 month meetings with her internist and neurologist. I don't feel I have anything to contribute compared to your many contributors but I have been following with great interest. I have benefited from joining a live caregiver group, even when at times they were dominated by very needy ones. I still had fellow feeling for them and stuck with the group . Unfortunately for the last 4 mos, meetings had to be cancelled because I was the only one.willing or able to attend. I still try to navigate a huge caregiver site occasionally but, and it is somewhat beneficial, but difficult.
I hope you never leave permanently. Believe it or not but I initially started this today to pose a question concerning putting a DNR in place but it might get lost in this rant. So...anther time
I have been going through the same thing since the beginning of November. I visit my husband just about every day for hours and don't feel right unless I see he is okay. He asks for me all the time which just makes me very sad and very guilty.
Thanks for a great blog Joan, I am very proud of you in so many ways, though I know it is so very hard for you.
It has been a year since Dado's two placements, actually 13 months. I do find that having him in a big facility, as compared to the 9 months in the Adult Foster home, is different. Also, he was close to me in the Adult home, so I could visit more often, and wrangle him in to the car for short drives.
Now he is a two hour drive away. Though that is tough, he has the more advanced care he needs as he changes.
I have it down to a bit of a schedule now, and visit three full days a week, driving twice to town and spending one of the nights over there. Thank God he seems to be getting "used to it" too, and I can tell he is glad to see me, though he does not talk or always respond.
As for me....I am doing pretty good, not crying as much as I used to, not quite as hopeless, and...even finding a few true gems in the friends and people that care department. In the past three years, people that I have know for years have shocked me in their not caring and judgmental ways, giving up those old relationships was very hard for me. And they have not changed one bit, still do not hear me or really care. Ugh what a reality that people are so selfish.
Upping my vitamin regime and eating healthy foods has really helped me cope. Also I am very active with yard cleaning etc, so feeling somewhat strong.
The ennui is awful, but I recognize it now. Hopefully it will not last forever.
Glad to hear you enjoyed your trip, and that your son is feeling better.
When I read your blog, I felt a pang of sadness for you. I can't imagine anyone thinking you are abandoning Sid just because you don't visit every day and stay for hours on end.
I think when you realized that placement was your only option, you became very depressed. But, as far as retreating to bed goes, your body was probably telling you it needed to replenish itself.
Six months doesn't seem to be an unrealistic amount of time to adjust to your new life. You spent so many years putting Sid, your dad, and everyone else's needed before yours, that it is a huge adjustment to start to think about yourself first.
Thank you for all you have done, and continue to do for us here at "Joan's" . Now, take some time and think about what you can do for YOU.
Good to hear that you are in a better frame of mind, Joan. AD just sucks the life out of us caregivers, not only our spouses. Just keep taking it one day at a time. It's hard to believe that it will soon be 6 months since I placed Clare in the dementia unit of an assisted lving facility. I still visit with her every day for a few hours ... but it never gets easier. Each night when I come home afterour visit, I am totally drained, emotionally and physically. I don't want to see anyone, speak to anyone, etc. I just want to eat my supper, read and watch TV, and be by myself. That has to change ... but that's where I am now. It never gets easier.
acvann that is it exactly. It makes me feel validated to read your post. That is the same thing I do, isolate when I get home, don't pick up the phone when it rings. There are maybe two people I will pick up for...as they allow me to feel how I do without trying to fix me. And, each time I drive back to the Home, even though it has been maximum two days in between visits, I always have a bit of a dread and a fear in my gut.
and your comment'"that has to change", I believe that too or I will go mad. I have slowly been working on shaking the ennui, and forcing myself to do good things like go for a walk etc. It has been a year since his placement acvann, maybe we get just a tad more used to it as time goes by. We have to not get too zapped of strength right now, as we know, it will likely get even tougher.