I invite you to log onto the home page - www.thealzheimerspouse.com - and read my new blog. I think I have addressed everyone's concerns and perhaps helped some of you who are suffering from depression.
I have a neighbor who is slowly dying. He is on hospice. The house is a mess with piles of stuff everywhere. The wife used to be very active in her church doing a lot of community service. She did a very courageous thing- she developed a roster of people who will come in to sit with her husband so she can play bridge with her group. She breaks up the day so none of us have to spend more than 2-3 hours with the man every week or so. She refuses to be ashamed about the messy house. She went through a list of everyone she knows and came up with quite a list. I was surprised to be relieving a man who also volunteered. We all feel good doing it and the wife can live a more balanced life. Personally I would have never dreamed of asking so many neighbors for help. Desperate times call for desperate actions.
Joan - I know you have said it is not time for placement, but like others have said - if you are sick, disabled or die what good will you be to Sid? I think you really need to think of placement even though Sid will resist and fight with all he has. Your health is more important than him getting his way.
Dear Joan I just finished reading your blog concerning depression while caring for your father and spouse. You are right on about needing some ME time. And you already realize that stronger doses of depression meds are not the answer. While my DW was regressing I too talked to my primary about something stronger and found that a different type of medication was given which did not increase my dopey feeling but just helped me to relax was just what was needed. I found that since I could not/would not leave her alone I had to find something at home to just get away from "it" for a while. That was where spending time on the internet and searching for a penpal really helped me to get through. My daily dose of outside reality was enough for me to get out of the trench and listen to someone else for a change of pace. While I know that you enjoy all the things you talked about in the blog, I also know that most of those things are AZ related and do not offer you an escape. The going out to the beach and for a manicure are not AZ related things and they will and can do wonders for your depression. But when your on a tight budget the things that you can do for free are the things you never need to feel guilty about like sometimes happen when money is an issue. Reaching out to others and conversing about non AZ issues are sometimes just what is needed. Trust and believe that the Lord will help you if you just ask. May God bless you for all that you do for others and the flip side is allowing others to help YOU in your journey through this AZ hell.
Just know that others care about you and you have became like family to all of them. Thank you for your service but please allow us to return our thanks by helping you. Bruce D *
Your latest blog is yet one more bulls eye, Joan and I think what you wrote is true for many of us. Whereas I relish my ME time in the house while my wife is sleeping, it is the ME time outside of the house ... when I am at the bowling alley for a few hours as I will be today when a friend takes my wife to lunch, or when I go to lunch with a friend while my wife is at the Y once a week ... that helps to keep me from full blown depression! So, please, Joan, take care of your health but also find that ME time both to sit at the beach by yourself when you need that private escape ... AND that ME time to be with friends where the discussion and thoughts center about anything other than Alzheimer's. We all need you to be well!
Joan, being with non-Alzheimer's people is key. My DH is in a day program two mornings a week. The first few times he was there, I bought groceries, went to the bank, drugstore and did other errands by myself. I thought I needed time alone. Still had that lonely feeling. Now, I'm using those mornings to be with friends - having a nice early lunch out with people I enjoy being with (no Alzheimer's talk). Also go to gym or get some pampering with a friend. Makes a world of difference.
Good for you! Somehow I don't think it is as easy for female caregivers to force themselves to enforce the ME time. Perhaps it is because we spent so many years putting our families before ourselves. I know we should be more selfish. It is for our own good.
Here I am in my twilight years with a dh who couldn't bear to retire until the late age of 74. Looked forward to retirement but it wasn't meant to be because he was dx'd shortly after. Friends are all gone, family is scattered but supportive.
I am too old to get depressed. It is what it is...apparently my calling in life for the one I love. I will do whatever it takes and beyond. Roles could be reversed.
This topic is why I push so hard for Caregivers to get help in early; find ways to get respite; and take care of themselves. I learned it all the hard way. After DH's Mentasl Breakdown (March 1988) I took it all on. Counsel with DHto help him clear confusion 12-4hours a day, raise Daughter,;run household, etc. During he 3rd yearI joked to a friendthat I shoulkd sign upfor aDepression med trial being advertised. She seriously agreed, and keptafter me--oifferred to drive me to the appointments, etc. Over the next yearI comletedthe study, was referred for follow up careaqnd elected counseling as ell, for my Clinical Depression. I learned a lot. I recovered. AndespeciallyI learned my triggers for theproblem and what to do to defuse them. Caregivers cannot do it all. THey have to learn to concentrate on the things THEY have to do. Get help in; delegate chores;let somethings go. At the same time, TAKE time; MAKE time for yourself. This is not selfishness. IT is self-preservation. Unless there is a deadline,draw a line and stick to it--no more chores, paperwork,etc. affter __time. If feeling pressuzred---stop---take 15 and have a treat, go for a little walk. Don't let go of things you enjoy until/unless there is no other choice. It wasn't until about 2.5 years ago I was pushed into taking respite time---4 hours a month. It hadn't been available before. This was to be for me--not my medical appts, orbusiness for us. Aftersaying thanks and hanging up, my mental reacxtion was, "What the H**l am I going to do witxh that?" I figured it out... and WAS BETTER FOR IT.
DH was Placed Jan. 30th. After 24 years I am no longerahands on Caregiver. I'm learninganew role as his Advocate. I had to relocate--my whole life haschanged on a dime.I am sad but excited for new thinhgs to do; I am tired and I have no schedule--adrift. I cancome andgo as I chose--when I get brave enough. Habits are hard to break. There is no guilt. DH is exactly where he needs to be. I am recovering from the years of short sleep, and iisolation, and I am launching my new life. Do whatever it takes--Day Care, in-home help, volunteer sitters. If depresed get help.If not depressed, work to prevent it.
Another excellent piece, Joan. I am so grateful that you tell it like it is. No sugar-coating.
It is so easy to be overwhelmed and to despair, knowing what the future holds. Right now work is my respite. Very few people there know what is going on in my personal life. I like it that way.
I, too, thank you, Joan, for your forthrightness and tackling the issues head-on.
I do manage to get away probably more than most (at least for now) and have pretty much set up the network for later, as dh's AD progresses down the dark, dark path. But, I still have a hard time feeling any true joy (except when I am with grandchildren). This disease holds us all hostage and we are powerless to do anything about it. I resist anti-depressants, although, they have made life with dh so much more bearable (he's on them, not me). I'm afraid of the "fog" that you and others have talked about; and, I don't know if I'm truly depressed or not. Some days (sunny days, usually) are pretty good, others not so much. It is a great relief to be able to come to this forum and vent and discover ways to make the "issues" better, etc.
You and this forum are lifesavers. You're way too amazing in so many ways. Please do do whatever it takes to lift your spirits and stay healthy. There will be light at the end of the tunnel someday; you have to be able to enjoy it when it comes. God bless and keep you, Joan.
@ mothert: so true, this forum is a lifesaver. I find myself here more and more often. So many good people who understand and will listen without judging.
I thought I was doing well with depression and burnout. Then my dh had open heart surgery 11 days ago. While he was in hospital it was ok. Brought him home. Now I am feeling depressed and frustated. He will not follow instructions. He is not supposed to lift a milk carton and I found him trying to plant trees because I didn't get outside fast enough. And is not sleeping normal? He lays down, thinks of something, gets up, wanders around, lays back down, etc sometimes most of the night. So I am not getting sleep. Today I told him I would have the Dr. put him in rehab center if he didn't listen. In the 2 days he has been home more tears than ever. I need to get a grip because my job now is full-time caregiver between the alz and surgery recuperation. I can't tell you how much I appreciate this site.
Were you told that the anesthesia could possibly make the ALZ in your DH worse? His meds may have to be adjusted. Better tell his AD doctor what is going on.
JGranny you and your husband have recently been through a lot. He is still recovering from anesthesia and a strange environment. You poor dear now have to do everything and keep him safe. We are here for you. I hope things get better, soon.
JGranny--can you hire someone to come in and help you keep an eye on your husband? Also, is it possible to either lock your bedroom door at night (if you share the room) or lock him in another room so that he can be safe even if he's wandering? You need to sleep. Threatening him with the rehab center may or may not work--it would be more effective to restrict the area he can wander in.
Oh Marilyn, thank you so much for asking. You know, I have my good days & bad days. I must admit that I am having more good days though. I have some really good people in my life who do a lot for me. 2 friends from church came the week before Easter & painted my living room & kitchen (I helped, but they did the majority of the work). Today we are going out to lunch with one of the “painters”. I don't get much time by myself, but between my daughter & this lady I'm doing OK. Of course coming here helps. It shows me how other people are coping & that others have it worse off than I do (for the moment at least!) Thanks Marilyn for being concerned!
Elaine--I love reading someone's posts over time and seeing that they are making progress in acceptance, finding help, getting out of that horrible initial shock period! I remember your early posts and hoping that you'd find some solutions--and it appears you have. Great! I am into interior design and know that something like a new paint job can really lift one's spirits.
Joan, I read your blog and as usual it is Right ON. I have been off this site for awhile so I must have missed something. A few weeks ago you were sending Sid to daycare. Did it not work out? I am considering it for my DH. I have 4 hrs of respite a week on Tuesday. I use that time to go to a church ministry I belong to. We make quilts, turbans, walker carryon bags, throws, etc. and give them to hospitals, to homeless, safe houses, veterans, and anybody else that we think will get a blessing. People in the community donate material and other necessities. We have a lady that volunteers her time to quilt them on her quilting machine. I am very busy for 4 hrs doing something completely different, also wqe go out for lunch afterward. As much as I love the 4 hrs I am in need of MORE respite. This is the key to lift our spirits, get out and get involved, or just be with friends.
Day Care is working out better than I ever expected. Sid LOVES it. Looks forward to going - he's very comfortable there and has made friends. I send him from 10-3 on Wednesdays and Fridays. Then I head straight to the gym and work out for an hour. After I have lunch and do a few errands, it's time to pick him up.
I desperately need time with non-Alzheimer people. I get it for 2 1/2 hours on Monday afternoon when I play Mahjong, but I really need more. Don't have a clue where or how I'll fit it in, but I do need to try.
In upper East Tennessee, bluedaze. Too many hundreds of miles for me to come but I sure would love to. Be sure to give a report on what Alzheimer's wives talk about when they get together.
Joan, I could relate to your story. You are a true caregiver, always making sure everyone is taken care of. I am the same always thinking after I finish this task or that one it would be my turn. I ended up very ill over and over even going into the hospital near death. So that has caused me to reevaluate my life. I had started my AD adventure with the thought of helping my AD to have quality of life but I forgot about my quality of life. I would hate for you or others to sacrifice your quality of life as we all have just one life to live and we can't do it after we finish with this or that. There may be no time left or we are too sick. My AD is still at home as the MD tried a new medication and it has helped so much. However, if things return to where they were I will unfortunately have to admit him. We all have to decide when. For me when will be a sad time, I will question myself if I could have done one more thing to make it better but we know there is no better with Alzheimer's. It may be selfish of me but I want to live and not die along with him as does no one any good. So bottom line take care of yourself and remember you deserve quality of life too.
Sadly, too many of us do sactifice our own happiness, or quality fo life, for whatever reasons: no volunteers to help, no money to pay for help, just plain overwhelmed, we"ve lost contact with the world and don't know how to get back in, apathy, exhaustion and just plain old too tired. I am trying my best to keep a balance . I want to keep myDH happy and I want to be happy. Some days I acheive that, some days I dont, but that is my goal, because you certainly have one thing right. When this journey is over we may be too old, or sick or whatever to do the things we always wanted.
You are right - our circumstances vary and make different demands on us. Which is why it is so important to show love and empathy to all who come here in need.
Joan, the day care thing sounds attractive. I could never place him. I just want to be with him, although our relationship is more mommy and toddler anymore. And to think I had my tubes tied and here I am with another baby! He cuddles, kisses, snuggles, has an occasional accident, gets into everything, and wanders all over the place. I could use a break, but I would never give up this time with him. When the time comes, I will know that I did all I could and that it was just his right time to depart from this wretched existence. But as long as he has one smile left in him, I want to be there to see it!