As year after year goes by, a little tiny voice inside me keeps getting louder and louder. It's saying "What about me? Don't I ever get to have my own life?" I feel horrible every time this happens. But the other day I remembered this famous quote: "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness." Lately I feel like I have no life, no liberty and no right at all to pursue my own happiness. I really don't think the rest of that quote says "except for caregivers of people with dementia". But that's just about what it winds up turning into.
I think this thought is coming more frequently because since I started caregiving, major health issues have come up for me. I realize that if this goes on much longer, not only will I wind up with no quality of life later, I will wind up with no life at all, and no possibility of pursuing anything for myself at a later time. I really do love my husband—if I didn't, I wouldn't still be trying to do this all by myself, now well into the eighth year. But I look in the mirror and hardly recognize the haggard face looking back at me. Part of me really needs the hope that there can be more to life. But I need that "more" right now, not at some time in the distant, murky future when I might not even be alive to enjoy it.
Getting more "help" will not take care of this problem. What I need is about a solid month of sleep, and several more months of no responsibilities at all. Even placing my husband in a nursing home would not end all the responsibilities for his care and taking care of everything else. Right now I'm not sure even being in a coma would end all of my responsibilities. When I was wheeled into surgery a month ago, I was crying because I was so worried about my husband. You'd think at least when you were being wheeled into surgery you'd get a few minutes to worry about yourself!
Does there come a time when, no matter the condition of our spouse, we just absolutely can not do this any more? And how do you get over the feeling that, of course, you can do it just one more day, and then another, and then another……
Jan, I honestly DO NOT know how so many just keep going, day in, day out. I read about all the struggle, emotionally and physically. The frustrations with the system, family members with their own agenda and who really don't understand. Some of us aren't on an even keel emotionally, to begin with and have ailments of our own to one degree or another. The decision to place John in a NH was taken out of my hands by his doctors, so I'm not the caregiver any longer...and I know I can't do it safely by myself (especially now, with my accident and all this surgery). But, it really concerns me when I read and worry about so many here that are valiantly fighting to take care of a spouse alone, year after year, watching themselves disappear, emotionally, physically. I know ALZ takes its toll on the caregiver. I've even read that sometimes the caregiver may pass before the patient.....for good reason. I had noticed, after John was moved to the NH that I had sadly neglected myself. I've spent months catching up on dental work, physical exams and bloodwork, making appointments with specialists (arthritis, etc.), mammograms I hadn't had in several years, EYEGLASSES....all kinds of things. Oh...and trying to find and make new friends, get my "life" (what there is of it) back in balance. Yep, I look back at my own weak experience (I'm not as strong as others here, no kids or family to "help"), I would say that I came to the end of my rope and thankfully, his doctors recognized that I couldn't do it alone. I read here and worry that some of my friends are killing themselves slowly in doing thier best to keep thier LO at home with them. I've gotten kind of hardened and numb and wonder, "why"?
It's a choice is all I can say. I just couldn't muster up any more effort, for a number of reasons and am glad my caregiving was passed to someone else. Otherwise, I CAN without a doubt say that I would have passed before John, surely, one way or another, if not already, soon. By my own hand or nature's effect on me.
I believe you have answered your own question. From all you have described, the time is not now - it was at least a year ago. Statistics show that spouses wait at least a year too long before placing their spouses.
With placement, you will always be the care manager in charge, but you will not have to do the physical work 24/7 with no breaks. I have said it many times before - staff in nursing homes work SHIFTS. They don't work 24/7. They go home after 8-10 hours.
I not speaking from the experience of having placed my spouse. I am speaking from having listened, for the last 3 years, to countless spouses talk about being where you are now. Slowly, with their spouses taken care of, they began to take care of themselves and begin the process of making a new life.
Someone came in my office about a week ago and commented on how much better I looked. I hadn't thought about it but he said that he could tell because I wasn't under all the stress I had while Jean was still at home.
I agree with all here...I just have no choice but to keep my husband at home. I've had to have my outlets to keep stress down. My Kindle and my iPad (and playing Scrabble with several other spouses) are my fun and keep my thoughts off of AD. I love my toys and they help me SO MUCH to cope!
Every time I come in to the office after my 5 days of respite care, people at work comment on how well I look, so it definitely makes a difference!!!!
Jan if you are asking the question, the answer is now is the time to do placement. Joan's reasons are very true.
Your job is to ensure that he gets the right care - that does not mean that you have to do it. If placement ensures him getting the right care, then that is the way to go. There are no easy choices when dealing with this disease and as Jen said sometimes the choice is taken from us due to circumstances. Make the choices for the two of you before something happens that forces one on you.
There are several discussions on placement and how it affects some caregivers. Some of them talk about good experiences and others horrible. When you place a person, you are still their primary person - you go from hands on caregiving to advocate. One of the blessings I got when I placed my husband was that I got to enjoy him again. When he was home, I was so exhausted from the needs of his caregiving, I didn't really enjoy him and at that point there was still something to enjoy and appreciate.
"One of the blessings I got when I placed my husband was that I got to enjoy him again. When he was home, I was so exhausted from the needs of his caregiving, I didn't really enjoy him and at that point there was still something to enjoy and appreciate. "
I placed my husband in a ALF on March 6th. I still feel guilty that I felt I could no longer care for him. However, I have also found that I love my husband more, when before I was beginning to hate him. Still miss him terribly, however, it was the best decision for him & me.
I've been afraid that I was thinking of placement 'too soon'.. After all, DH can walk but much much slower now; talk like he's ok; feed himself even if he mixes everything together on the plate; he's not incontinent but can't automatically find our bathroom. He just ambles around till he opens the right door. He can't actually locate his own chair in that same way but stands in the middle of the room . His fury and more frightening behaviors have mellowed. His doctor remarked that there were two reasons for placement..behavior and caregiver burnout. Ummmm... He's happy that the behavior is much better.
I have found what could be a good place..and have asked the doctor to possibly support us with the notion that he is going there to have his 'blood pressure monitored frequently etccc..or for some minor health issue..just to at least get him in the door and willing to stay for a few days.. Yesterday DH went for a checkup. His blood pressure was perfect! In fact it was lower than its been in an entire month! I was astounded..He hadn't even had his blood pressure medication.
The doctor carries on a nice conversation with DH about his garden etc. DH lies like a dog about all the work he's doing in the garden and how busy he is etc. I sit there like I have so many times..listening to the BS and amazed that DH can and does convince anyone that he's able to function much better than he actually does. When I go outside to make the next apt. the doctor comes up and says..I don't see how you can place him now. I said I don't either. I left feeling completely defeated and thinking, now what can I do until its 'time'.. Hire a sitter to come stay?.. Been there..done that..sitters don't show up.. sitters leave without warning. DH can wander off and get lost. I've felt like this before..That I'm too tired to even know how tired I am. There's no physical reason for it at all.. I'm sure it makes no sense to the doctor who sees a man fully capable of moving around and apparently lucid enough to answer questions about growing tomatoes and yard care. Compared to so many of you, I feel like a complete wimp but I do think its time. Its time and I dread it. Its time whether the doctor understands or not. Whether I can actually follow through with placement or not, it IS time..and yes, probably past time.
Judy--I know exactly what you are talking about--in that no man's land between dx and being ready for placement. Just last week a good friend tried to encourage me to think about placement--he said I'm young, I deserve more of a life. But I know that my husband is still too "with it" in some ways--although he needs help with eating, dressing, bathing, personal care, finding the bathroom, etc. My salvation has been an adult day program, along with bringing in CNA's for the days he doesn't go to the program. BTW, I use an agency for inhome help and yes, there have been cancellations--but none ever "walked off" once they were here. I think you have been hiring the wrong people!
Judy, I started my husband out going to Daycare, at first he went 3 days a week. I then increased it to 5 days a week. I felt more comfortable than having someone come into my home. He also could interact with others...even though my husband at 59 was 30-40 years younger. When it became apparent, that I could no longer handle him alone, I placed him at the ALF on March 6th. I really don't agree with the doctor, I see first hand everyday when I go to visit, I see residents who at first I didn't think belonged there, however, if you see them each day as I do, you realize they DO belong. One lady, about 70 years old is very alert, however, she would walk away from her house & not remember where she lived. She was a threat to herself. You are with your husband 24/7, you are the best judge of his limitations. The doctor sees him only a limited amount of time. For many years, my husband fooled doctors with his knowledge, while all the time I seen him decline monthly. I begin to think it was me. It is a very hard decision to make. Hugs, Kadee
Judy, I don't thinki they lie on purpose. I just think they remember what they have always done. When my DH was home and I would come home from work, I would ask him what he had been doing. He would telling me how he cleaned up the yard and did this and that outside. Of course, he didn't do any such thing and I knew it. No point arguing. Can't you ever talk to the doctor without him hearing?
Judy, I don't know your Doctor but our PCP and Neuro both were very much attuned to my imput about my DH. Didn't think much of the Neuro otherwise, but that's another story.
On appointment day I typed up a list of his problems and actions. I would give it to the Nurse to give to the Doctor. In our case sending it ahead was not an option. He would go over my list item by item in a conversational way with Paul without revealing my list. They would talk about gardening, the family etc. They were very astute to my concerns and someone who sees dementia patients on a daily basis has met most all kinds of stages and situations. Paul did not feel like I was downgrading him and keep his self-esteem. Sometimes I would make an apointment for myself with our PCP and discuss Paul with him. I signed the Hipa papers but my PCP has been our Family Doctor for 50 years and we have a close relationship. (The Neuro did not have much to say and of course we had no history with him. One day last spring when we left the office, Paul told me he was a "Pill Pusher".)
I never discussed NH with our Doctor. I had been the caregiver for my Mother, who died 2 years ago, in our home with Hospice the last 6 months and knew things to expect. I had made a decision about which NH I wished to use - if it came to that. It did not come to that - thankfully - I called Hospice myself for an evaluation - I thought she was going to decline him - but because she was a personal friend of our Doctor she decided to admit him for 90 days before calling our Doctor. 5 days later - much to their astonishment - they ordered a Hospital Bed, Oxygen, Catheter and he passed 10 days later at home.
Judy-- I think you will find that assisted living facilities have plenty of people placed at this stage. What if he didn't have a wife? When children are the primary caregivers they would be fairly likely to place at this stage, because he clearly can't live alone. Might the place you have in mind give you support?
Judy - keep in mind that we each have our breaking point or limitations. Some people are natural caregivers - dealing with the pee, poop, having to shower them, the total care thing - they are comfortable doing. Others like I think I am, will not deal with that very well nor the wandering/disappearing. I watched my sister care for her husband til the end. Me - he would have been placed way back when. He was dead weight and basically she did all the lifting for the last two years cause he barely could move. He was 6ft something, stiff and dead weight. She didn't place him cause someone told her she would have to spend down their $30,000 savings to $2,000 before medicaid would cover him.
so, do not berate yourself because you feel you are not as strong as others on here. You are you and you know your where your limit is. Plus, others have said it well: once they placed them the hatred/anger towards their spouse was replaced by a love.
Judy, the doctor spends maybe 15 minutes with you and your husband when your husband is using "company manners" or on his best behavior. Up until the later stages, they can fool lots of people for periods of time. Your husband cannot fool you. You truly are the best judge of how he is actually doing. Trust your own judgement. Use whatever method works best for you to think this through. My method is thinking through the pros and cons. Sometimes I even make a list to make it clearer to me. I then attach a value to each of the items on the list on how important they are to me. Using that, I then make a decision. As you are doing this, you need to also include the toll that you are paying trying to take care of him. You are asking this question for a reason so there must be something there that is making you question whether you can continue to care for him or not.
This is not an easy decision and you my vasilate back and forth for a while. It all comes down to making the best choice for what is right for him and you. ((Hugs))
Mine is still at home. I'm cheap and lazy. Getting him qualifed for Medicaid and spending down is too much trouble. And we cerTainly can't afford 85000 a year for a nursing home. If he could go into an ALF at maybe3500 a month we could afford it but he can't.