Well it has taken me almost a year but I am placing him on Monday in An assisted living. I had found another place that I was going to try to self pay but after leaving him in respite for a week my kids did not feel it was the right place. The other facility where I had been on a wait list finally opened up and the kids thought it was better because it offers continuum of care and the other place did not. So I am applying for Medicaid once I get him placed. I have a lot of mixed feelings but the bottom line is I am tired of being tired and angry. Anger and frustration have been the main emotions I have had for the past 5 years that and a ton of resentment. I truly hope I can be a kinder and gentler person because he does not deserve the witch that I have become. My patience ran out a long time ago. A friend of mine said to me well now you can get a life. I honestly do not know what that means. I only know it will be different and that the journey will not be over yet. Right now I think I will try to find a little job outside the home and maybe be a little more connected to my church and my friends. There are some things I want to do in the house but other than that I do not know what it means to get a life. He is still walking and talking but seldom makes sense when he talks. He is having toileting issues and needs assistance with everything. Yes I probably could keep him home longer but I know it is time for me to place him. I have talked to people who have kept them home for the long haul and it is not the best for me. It almost nearly killed them. I do not want to end up in the hospital. I guess I am planning ahead . Thanks for listening.
What does it mean "to get a life"? I've been thinking about it since my wife moved into an ALF just a week ago.
The best explanation I can give is that every minute of your life no longer revolves around your husband. Right now it is many small things for me. I no longer have to write on the white board before I go to work what we are having for dinner. That I don't have to constantly worry about waking her up so I can now shower and shave in the morning instead of the evening. That I don't have to eat dinner at 6pm or when she is hungry. That I can now do some repair jobs around the house because the chaos that is part of working around the house won't disturb her. I'm able to set the alarm clock. Being able to watch TV with my son during the week. And I can read books at night before going to bed.
The next step is probably doing things that I haven't been doing because they upset her routine, such as going out with coworkers after work.
For me it doesn't mean making major changes to my life. I am still talking with her every day. I will be active with her on weekends, haven't figured out how long or at what times, so no weekend trips. So I'm not having a separate life from hers but it will be different. It will take a while to figure this out.
I expect my life will change more as time goes on.
Your life will have some changes for the better. You'll be able to go and visit and have a lot of patience since you won't have the day to day aggravations. Yes, it will be lonely, especially in the evening.When I placed DH, he was just about like yours.
CO2 - I think that you aren't ready to retire and just have years of just caregiving in front of you. I'm the same when I can get him placed I will do it. So getting on with you life will be not living in "limbo" any more and having control of it back living it how ever you want it to be. Also to get back to the person you really are not the "witch" you have become...I know that one too.
CO2, I am glad you have found a care facility for your DH. My husband has been in placement for 3 months now and it was a HUGE weight off my shoulders, once I left the facility that day. When I visit, he is always glad to see me, totally different from the angry, distant man he was when he lived at home. It has taken a while, but he has acclimated to his new home very well now. He likes the staff, they are all very sweet to him and he has not needed anxiety meds since he was placed, the most important indicator to me that this is the right place for him.
I'm not sure about "getting on with my life" cause my life is still about - and with - him. I spend most afternoons with him, but sometimes I just hit a wall and cannot go anywhere. On those days, I indulge myself with no guilt. He is well cared for and his needs are being met. I'm learning to take care of me.
Although I now have the time to think of my future, I'm not ready. I am giving myself time to just grieve and recover (or maybe I'm just loving the laziness and wearing sweats & shorts all the time). I hope his adjustment is easy on both him and you.
CO2' Your post sure hit me hard. I too am at the end of my rope. I'm no longer the person I was before this disease took over our lives. I use to be fun and full of life but now I'm angry 95% of the time. If he didn't know me I would find it easier to place. I start to place and then guilt takes over and I back out. I wish the decision was out of my hands. Good for you for being able to move forward. Wishing you peace in your days ahead.
Flona68, Your post is encouraging. I hope to be able to follow in both your footsteps soon.
CO2 - like you resentment is turning to anger and a person I don't want to be nor does he deserve. The only saving grace is he does not remember. It even makes me more angry when someone tells me how great, giving and special I am to say with him through this - as if I had a choice!
These are the things that haunt me long after Gord's passing. I have said before, I wish I had listened to the psychiatrist who told me that I had to place Gord. I have a constant video running through my mind of all the times I became so impatient, especially in his last 6 months. I think when you are in the middle of this caregiving, you don't realize just how hard it is. Looking back, I wonder how I got through it and I wonder the same about all of you.
Thank you all for your kind and supportive comments. I made this decision for my husband as much as me. I decided it can either stay the way it is or I can place him. As Dr. Phil says "how's that working for you". For me I knew deep down it was not working for me or him. I encourage anyone out there who is on the fence regarding placement to just go within and ask yourself if the current arrangement is working for you. For me I came to the conclusion when he walked into he ladies room at the senior center and they called and suggested I not bring him anymore that it was not working. I also knew it was not working when I went on vacation 3 weeks ago and they called me from the respite place to tell me he was urinating all over the place and that I would be getting a $100 carpet cleaning bill. Everyone comes to this decision differently. Sometimes it is simply the overwhelming physical demands. Sometimes it is the emotional toll that it takes that drives us to decide. I made excuses for almost two years telling myself I will never apply for Medicaid but my oh my how things change. For me it was an inner knowing that it was time. Something inside of me shifted and I gave myself permission to do this. I encourage all those still vacillating about placement to go within and you will know. It may not be today or tomorrow but you will know. And yes you can do it because I am.
I wish you well in this decision. There will be adjustments, as you well know, but hopefully you can "get a life". Personally, I am "at the end of my rope". I am no longer the person I was, and to be honest our life experiences form us and change us. I will never be the same. I don't know "me" anymore. I have changed. In some ways, I have changed for the better, some for the worse, but I have changed.
We can never recapture our time lost. Years...of self-sacrificing for what? When will it end? I don't know if placing your husband will finalize it, but I do hope that you can move on to a normal life. "Normal life" sorry....Alzheimer's disease has robbed me of forgetting what a normal life really is.
Proud of you for making this decision CO2. And thank you Jang* for those honest, true, and hopeful words for us that have made the decision to place. I often wonder too, looking back, just HOW did I do it all, working, driving, taking care of him and our place. Well, it almost got me, with a deadly case of pneumonia, and I am healthy.
So for all of you, so many, going through this, many many blessings and hope.
CO2, I like your description of how you came to the decision to place, that it was "an inner knowing that it was time. Something inside me shifted". That is what it was like for me. It wasn't any one specific behavior, but an acknowledgement to myself that I couldn't do this anymore. I refuse to feel guilty, I did it for him and continue to love and take care of him. Now, however, it is in partnership with the great team at the ALF.
Thank you, Jang*, CO2, and Fiona68 for your honesty and validating my feelings. I am consumed with guilt for needing a break. Somethings with him are bad and others not so much. I cannot figure out if the placement will be good for him or if it is a selfish desire of mine. He is a dear person and I love him but I am edgy and weary and not sure if I even remember how to laugh. I don't even cry anymore. It is like I am turning into stone.
Oh my. How I needed to read all of your thoughts today. I must do something and I feel paralyzed. My husband has Lewy body dementia. He can still perform his ADLs but it is the emotional toll that is making me like a person I never was or ever wanted to be. He has hallucinations which were my original deal breaker, and I thought, oh well, they are not scary ones so I can deal with that. Then I said that incontinence was the deal breaker and yet I have dealt with that. Now it is the two or three times a week we are up all night because he thinks it is morning. Taking a shower at 2 a.m. Taking his pills in the middle of the night until I locked them up. Cannot follow any simple command. I cannot leave him at all. If I ran to the post office, he calls and asks when I will be back. Have a care companion two days a week for 6 hours a day. But I want to up that to 4 days a week and 3 nights and I feel like a selfish brat. But I just am so tired of doing everything with no break. I cry every day. I desperately want to get out and see my grandchildren but that's impossible because they are an hour and a half away and I wouldn't make it within my current free time. And yet, I think, it is he who is serving the harder sentence. Have got to reconcile these feelings so I can have a life again. And I do want one.
Ladygolfer I feel your pain. This life with AD brings such despair to us. The emotional toll can only be understood by those of us who live it. It sounds like you have reached the breaking point. You deserve to get more help however that works best for you. You need to have a life too. You deserve to see your grandchildren I am also to the point where I can no longer leave him alone . I do not know how I will handle my next step. Guilt, despair, Tears, hopelessness Re my emotions today
Oh how I understand you when you say you don't like the person you are becoming. I am stressed, tired, angry, frustrated, and lonely. I am so many adjectives rolled into one.
NO, you are not a "selfish brat"!!!! You are a woman who is deserving of a better life style than continual caretaking burdens. You are missing out years that you will never recapture. This is not selfish!
The "deal breakers" continue on and on here as well. Just when the line in the sand is drawn inch by inch I move it to the next level. I can't reconcile my emotions either. I am spending today locked in my room crying. I see no end in sight. Sorry for what you are going though Ladygolfer6970! I hope that tomorrow and the days following will brighten!
All those that are quickly coming to the end of their caregiving rope please put up their hands.....CO2, Charlotte, Marilynn, Amber, Lulliebird, bonnie, bonnie, ladygolfer, Lorrie, and....the list goes on.
I truly wish that those people in positions that set the rules or our friends and family that say he's not that bad why would you want to place him, lived our lives for one full month...I think then things would change for the better and not make us jump through so many hoops.
Thank you all, ladies. Of course I know we are in the same boat, but sometimes it just helps to hear that someone else understands. If I hear one more friend say, after 2 hours at a dinner out, that he looks fine, or worse, he looks wonderful, I'm going to scream. But sometimes, kindness shows up in unexpected places. I ran into an old neighbor while walking the other day, and he said, how's our friend doing. I said not so well. And he said, how are you. And I replied, not so well either. Then he asked if he could stop by one afternoon to see him and when would be a good time. I cried. He looked surprised. I told him I was so touched by his kindness, he couldn't even imagine how grateful I was. How sad a commentary is that.
Amber I just let go with one hand. I'm getting closer and closer to placement. The hand that is holding on is holding with guilt, depression, frustration, fear, and any other adjective you can throw in. I'm checking out another place tomorrow. I have looked at so many facilities. The cost is astronomical as you all know. Average cost here is between 5,000 and 7,000.00 a month. Cost goes up as their needs increase. The facilities also raise the cost annually 2-5%. What amazes me is that all facilities have cameras but none are allowed in patients rooms. I fully understand privacy law but these patients need to be watched 24/7. Those of you who have placed and found good trusting facilities I'm happy for you. My brain tells me what I need to do now how do I get my heart to follow?
The last 6 months that my DH was home, he enjoyed the Day Program he attended and not much else. When he was home he either wanted to go back to the day program or just wanted to "get out of here". He didn't want the caregiver here, didn't want to be with me, didn't want to go for walks, didn't want to shower or change clothes. I could go on and on, as you are all aware. He was very anxious at home because the world was too stressful for him. I don't feel guilty for placing him. He is much calmer there and they have activities in a comfortable secure setting, which I couldn't provide. He was on anti anxiety meds at home -which were not working very well. Now, in placement, he does not need anxiety meds at all. I haven't abandoned him either, I'm there most days of the week. He just lives in a setting that is equipped to manage his needs. It's still honoring the vow i made to him 14 years ago. Guilt is a waste of the little emotional strength we have.
I don't feel guilty abouot my DH being in a NH.We're married 58 yrs. but I would never make another year is he was still at home.It was getting more and more difficult to have him home,even with help it was too much for me.I usually go every day ,even if it is for a short time.Sometimes he gets upset with me and I tell him I'm going home and will be back the next day.I pay $305. a day for semi-privateroom, and course almost everything else is extra.I am waiting for Welfare Dept. to tell me how much of our savings are allocated to my needs and when his share runs out he will go on Medicaid.Believe me it is worth it having less stress and finally some free time.We have always been frugal, so I don't anticipate having a problem,
My heart goes out to all of you struggling with the decision to place. Many of u have more on your plate than I do so I can only imagine. Keeping your loved one at home is admirable and I struggled with that too. But I had to ask myself what good is accomplished if 2 people go,down the tubes with this disease? No matter what we do we r not going to save them. They r not going to get better. Then the question becomes how or what do I need to do to save myself? I truly think with this disease that we become so stuck in our emotions (for me anger, frustration and resentment) and for others paralyzingly guilt, sadness and depression that it prevents us from making rational decisions. I belong to Recovery international which is a organization that offers support to people dealing with many of the negative emotions mentioned above. They provide what they call tools that u can use when the negativity comes. It has helped me immensely. They have free support groups as well as weekly phone groups. One of the tools that helped me is "any decision will steady you." I think part of the struggle is our indecision about whether to place or not. Once the decision is made there will be some relief at least there was for me. My thoughts and prayers are with you all
When I placed my wife, Clare, on an ALF room waiting list back in May, I thought I was being so wise. Everyone in my support group said they had waited too long to place their spouses, so I was determined that I would not also wait too long. I dealt with my emotions and guilt and decided the time to place was now (this was back in May), well before Clare's needs overwhelmed me. Told that it might be around 6 months before a room became available, I told the ALF director that was perfect because although I would place Clare now were a room available, I'd actually prefer to wait until sometime between Thanksgiving and New Year's. She was still basically at "Level 1 care" with all of her ADLs at that time ... perhaps between 1-2 in a few areas ... but I felt no urgency on placement. I always thought my "line in the sand" would be incontinence, and she was continent at the time. But we were arguing daily over morning and evening routines and that's why I thought back in May that it was time for ALF. We were arguing more in a week than we had ever argued in a year. I thought that if ALF personnel took over responsibility for all of Clare's ADLS, then when I visited Clare each day we could enjoy just being together and not argue about anything. Now, 3 months after placing Clare on the ALF wait list, I'd place her today if a room were available. ... but she is still #3 on the wait list. Meanwhile Clare has already become incontinent (urinary only so far, thank goodness) and is now wearing Depends 24/7, the arguing has worsened, and she has advanced to Level 2 care in all but one of her ADLs (transfer). Bottom line: Anyone who plans on placing a spouse in an ALF ... or NH ... should do so early on if lucky enough to find a place that keeps you #1 on the room wait list even if you keep turning them down a few times as rooms become available. In retrospect, I should have placed Clare on a room wait list back in January instead of waiting until May. But, for me, it is what it is.
Thanks for the advice! Your are doing a wonderful job caring for Clare and giving her your all. No one has the crystal ball on the progression of the disease and that's what makes it difficult to come to terms regarding a timeframe. The ALF & NH (unless you have long-term health insurance) are so costly that I believe that's why many caretakers wait until as long as they can in this decision. I have always said the incontinence would be my "line in the sand", but when the chips are down we really never know we will react.
Medication- have you discussed with Clare's PCP or neurologist her uncooperativeness? Perhaps she's due for an adjustment? This is so hard on you in addition to all the other stressers.
Wishing you a speedy and successful placement. Best of luck!