I invite you to log onto the home page - www.thealzheimerspouse.com - and read my latest blog. Does anyone else feel the same as I do? Please post comments here.
Oh, Joan, my heart aches for you. You have been through so much, as all of us here have. I am sorry, however, that your heart has turned or is turning, to stone. Please, please don't let that happen. I believe you do need to feel some emotion - good or bad - but some. Many times, I feel the bad emotions, but am able to turn off those emotions for the moment and later get back the good ones. This is rambling, I know, not even sure what I'm trying to say. Anyway, we all are supportive of you, thankful to you for all you are to us...Go, and have a great, relaxing trip!
Gosh! I wish I felt ready to take a week of respite. I'm sure the reaction would be similar. Well, Maybe not. When his new caretaker was here on Friday, I went out to the store for an hour. When I left he said I should get a lawyer. He is alwasy threatening to get a lawyer and divorce me. I think it scares him when I disappear for an hour or more.
Joan, have a nice visit and come back refreshed. Sid will survive and be happy when you return.
Oh, Joan. You are not developing a heart of stone. In your own words, you are "too weary, too burned out, and too stressed". You are NOT too uncaring.
It seems like when we do this long enough (and by that I mean—too long!), we're too burned out to even have feelings, except for sadness and/or exhaustion. And that's no way to live, month after month, and year after year.
If anybody ever needed a wonderful period of respite, you do. You deserve it. I hope your sister spoils you the whole time you are there. Remember that caregivers are entitled to a life, too, and I don't just mean when our caregiving duties end.
So in our lives before this disease, each of us spouses put up with each other, bending with the more important needs of the other. If they got upset, it was just their turn. We all had our 'turns'. That's marriage. Now with this diagnosis, POW, we are supposed to stop our world and make every moment of theirs go around. Yes it's sad, yes they don't understand, and yes we want to make what time they are still here the best it can be, both for them, and for our own memory of how we were there for them. It just seems that it shouldn't exempt them from having a 'turn' once in a while. Especially when we have dragged ourselves to the ground trying to be the answer to every troublesome problem that is created in this awful experience we share. I say, it's his 'turn' Joan. Go and enjoy this time without analyzing your lack of emotion. You know the dedication and love you have given, and have hit that burnout time where you MUST have some respite. If you really let yourself enjoy the time you are gone, I'm sure you will find your heart is still ticking. Hugs to you dear lady!!
Nope, not a heart of stone; still a very caring and loving heart, but with the recognition that you have reached the point where you must place your needs above his. When I finally placed Clare in some day care programs 3x/week a few months ago, she screamed at me, ranting on how she'd "never do THAT to me" and she couldn't understand why "I was doing that to her." Her words hurt ... but that didn't deter me from dropping her off at that first day care session. I needed some 'me time' and I just couldn't deal with the 24/7 stress anymore. I needed a break and had to place my needs above hers. That is all you are doing now with this planned trip. So your heart has not turned to stone, Joan ... you are simply accepting the latest phase of your 'new normal' and doing what you must do to take care of yourself ... something you must do in order to be able to then take care of Sid. Go and enjoy.
Agree with everyone else, but in another way. Your heart is not turning to stone. It is doing another Caregiving job. In dealing with Loved Ones there are times when we must stand solid and strong for them, even when they get peeved, angry, cry, wheedle--make us want to cave. It's called "Tough Love" and we do it for their benefit. You are worn out, exhausted, and stressed past continuing endurance. You will have your respite; Sid will be fine, and you'll be able to continue his care in whatever manner you decide. Where will he be if you don't take this time and collapse in a medical or emotional breakdown?
You My dear Joan, you are all heart. You keep us all standing with your support. Let us help you. I have felt like you and being here on this board has been my life saver. You are wiped out. You need a break and a rest. When you get back, nothing will have changed but you will have your stamina back. This is no easy path we have 'chosen". I say chosen because we could dump them somewhere and let others worry about them. We love them and even hate them sometimes. We remember when life was wonderful. It isn't anymore, yet we still love them. So Joan in the end I feel all this stress and tauma you feel is just more of the Alz fallout. Be the patient for awhile, let your sister be good to you. You deserve it. You are not hard hearted, it just a matter of self preservation. I'll keep you in thoughts and wish you peace and rest, a glass of wine, an ice cream cone and a great book to relax with. Here's to you our esteemed leader. We are with you.
I can totally relate. In fact I am putting him in respite for the first time next weekend for 3 days. This is the first time. I realize I need time away. Fortunately he understands as much as he can. He at least is not fighting me. For that I am happy. What wears me down is not abuse so much as the constant questions and the constant requests for help. It just wears me down.
Your heart is not turning to stone, you are burned out. It is sad. Hopefully you will feel differently once you get some rest. I suspect that your feelings may not feel warmer towards Sid until he is in LTC and you don't have the daily constant burdens of caregiving. You will still be involved, dealing with crisis, etc but should be more able to deal with everything.
Sid's reaction is probably exactly how L would react if I went away for a week without her. It is something I can't do now but will probably have to do in the future.
Joan, I agree with the others-your heart is not turning into stone, you're exhausted from all the caregiving and you need this respite for your own survival. You need to be healthy and rested to continue caring for Sid. I am always amazed that Sid is so aware of what's happening and can verbalize his feelings....my husband MIGHT understand that I was going away but could never verbalize how he felt about it. Thankfully he does not cry and pout, although I think it might be a good change from the agitation and aggression.
Enjoy your time with your sister-you deserve and need it. Sid will be okay.
I just returned from the doctor. It was a follow-up on my back, which is doing much better, but I really went to talk to him about my mental health. We both have been going to him since we moved here 6 years ago, so he has seen Sid's progression into AD and my progression into burnout. I told him that the case manager was coming this afternoon, and that I had to get Sid on a list for placement. He said to do it now, because it could take time. He said when his name comes up, place him, because he's only going to get worse, and I have to take care of myself. Not that I didn't know that, but it helped to hear it from the doctor.
The case manager is coming this afternoon - we'll be discussing everything.
i was going to add joan that this respite will allow you to see and feel how much you need some downtime from caring for Sid. either way whether he enjoys it or does well or not, you should go ahead and get on the lists. your meltdowns are showing your fracture cracks and we can all see it from the outside here. we want you to do whats best for you at this point. sid will survive as do all our spouses whether they are ready or not. divvi
joan, ditto to what divvi wrote. you need to do this for you. too bad it's not for a bit longer. i have gotten so that i don't tell my hb about anything until just before, like half an hour or so, as he obsesses so much and has so many questions that i get so distracted that i forget to do things. it's so strange that they are all so different and yet so alike in some things. i too am at the burned out stage, as are most of us, and wonder how long i can hang on. i have responsibilities with our business (keeping books, paying bills, etc.) and also grandchildren here after school and some saturdays while dil works, hb gets agitated some days over their cartoons and somedays not. that's enough of my story and hope that you can truly get some rest and relief on your trip.
After reading you for a year or so I am so moved i have to comment on this. I too have become disengaged emotionally, I am not married any more, except I will honor my vows if only to show my adult children how to walk the walk. i have the resources to put him in a dementia unit but his abuse doesn't stop. it is the only way he can make sense of our not being together. he was horrible at home, like many others, where are you, who have you been with etc. His emotional memory is unfortunately still intact, mine is battered. A fellow psychologist said it is akin to the "battered wife syndrome" in that I have some symptoms of PTSD, as you may also be having. My support group is a wonderful resource.
Interestingly, he has accepted that I am going away, but he is moping like a little puppy; asks me over and over and over again, when I am going, since he can't remember what I say. He has kind of "gotten it", in his own convoluted way, that I need a rest, so he keeps repeating - "Why can't your sister come here?"
The big hurdle is that he still doesn't realize that my trip coincides with Thanksgiving. That has always been the biggest holiday of the year in my house, and when he realizes we are not going to be together for it, he is going to be crushed. Even with the ads about Thanksgiving on TV, he hasn't mentioned it at all, which tells me how far he has declined in a year. Usually, he's asking a month or more in advance about our plans. I do intend to tell him, but in an off handed, not important, kind of way.
But yes, I do intend to have a darn good time. Even if it is 40 degrees colder in Chicago than here in South Florida.
Joan, I don't think you have lost your heart! I think maybe it just has a dimmer switch on it. I think at least in my case that is what has happened. When I go out with my dh and people see him they are all very sweet to him....then when I see them later without my dh they all are profuse in their sorrow at how hard it must be for him etc and all. Then I see him through their eyes and how they are shocked at how much decline there is; it hits them hard (he is only 60) but we, who live with them every day every hour and every long minute know if we lived with our full emotions I think it would literally cripple us with sorrow. We have to carry on and take care of everything so we are strong but sometimes we just let it out and meltdown. It is ok. It is good to recharge your batteries. I am leaving dh for three days next weekend but haven't even told him yet because the questions would drive me insane. He will be hurt but I can't take him-- he could not take that long of a drive. Please have a wonderful visit with your sister. You need a break!
Yes, yes, yes....you have more then earned this break. Go and have a great time it will do you a world of goood. Thanksgiving in our house has always been the big Holiday because my birthday is on Thanksgiving sometimes...last year it was.
Joan, you have a good heart. It is just broken right now. I hope you have a great time on your break. You are doing the best with what you have been given. Don't be so hard on yourself.
Joan----grendelsma2 echoes exactly what I feel (and my DH is also only 60)----if we lived with our full emotions it would cripple us with sorrow. So you do NOT have a hard heart, just one that has "adjusted" so you can carry on to the best of your ability. Enjoy your Thanksgiving and let your sister take care of YOU! Hugs.....
yeah, that's a soul crusher. Broke my heart a little just reading it. Dear sweet Joan, I feel so deeply for you. I can see myself in you, where I was four years ago when I was facing placing Lynn. Though I never was able to harden my heart, even when I dearly wished I could. I don't look at this as your heart turning to stone, I think it is more how a we have to turn a deaf ear to a child’s cries and whines to save our sanity! You love too much, and that is why you have been hurt to this degree…..
I hope you find the strength to follow your doctors excellent advice. Without a doubt it will be devastating, but Joan, it can only get better. In time, after the transition period, when your mind and body have rested up, then you will be able to enjoy the time you have together. As much as it will hurt, I promise you, it will get better. I know you remember my heartache at placement, I am here for you if you ever want to talk… much love my friend ((hugs))
Thank you to all of you wonderful people. I do agree with everyone's assessment that I need a break. But Sid is determined to make me feel guilty. I am NOT taking the bait. I do NOT feel guilty. However, it is difficult to live with his constant crying, moaning about how could I leave him, incessant questions about when I'm leaving, when he is going to "the place", and when I am returning.
I figured I had two choices - I could comfort him everytime he cries or I could make a short comment and ignore him by leaving the room. I chose the latter. Basing my decision on my years of experience in education, as well as my years learning about AD, I know that if I comfort him, it will encourage him to cry and complain more. If I simply say that he'll be fine with Henry and Amy, and leave the room, he will cease the drama. It is the same as arguing wth an AD patient. Or anyone, for that matter. If they argue, and you don't argue back, the wind is out of their sails. They can't do anything; they have to stop because there is no one to argue with. I am not making light of his pain; I know it is real, but I do believe that a lot of it is staged for my benefit to make me feel guilty.
Joan. YOU DO NEED A REST...MORE THAN EVER...RUN DON'T WALK TO THE AIRPORT!!!!!
All the things you describe in your essay, I feel...and my DH has never been abusive in any way ever. We were just at the doctors, foot and neuro..news from both that great....circulation in legs questionable...maybe the stent has closed up...don't know if he can even have the test to see if there is anything else to help. Neuro...he is doing so well because of my unrelenting caregiving...and caregivers who do this for 3 years end up getting sick ( injured, migraines, sensory, you name it)..and he wants to see me about my GAD and I really think it is a " Come To Jesus" meeting about assisted living.
From what he said, Joan, I think your situation is such that if you are not thinking about assisted living for your DH you may need to do that and do it now. You have been taking care of 2 people for far too long and it is starting to take a terrible toll on you. Thing is we caregivers never see it coming. Even my new pcp has told me he needs placement even though I think I can handle it..obviously I can't..and this is beyond heartbreaking news...I am still trying to get my head around what I may have to do soon and how will I make out financially..
I too am discouraged by it all.Angry that family ( meaning kids to some extent) are not more involved with contacting him etc and so much more....and I have even heard myself say out loud " I can't do this anymore"....so maybe it is time to read those tea leaves as much as we don't want to do so...
Hang in there Joan and have a great time in Chicago with your sister. Sleep read and knit your little fingers off...do what makes you happy..How about shopping down town.. My mom used to take me in to Chicago just to see the decorations in all the store windows down town..State St etc....I'll dream about those days while you enjoy them..
Reminds me of when the kids were young and you were going out in the evening and leave them with a babysitter. They would cry and have a fit and then as soon as you left and drove out of their sight you could see them thinking "well that didn't work" and off they went to play.
Joan, there is not much I could add to the above. All seasoned advice. My only input was this. When ever I was feeling explosive (really bad) I schedule an appointment with a wonder therapyst recommended by my doctor. I think finding the righ person, perhaps a woman, their often more sensitive, could be very helpful. My insurance covers the visits. Afterward I was good for weeks at a time. The right therpyst with good training can help re-direct and even put you into a relaxed state. I'm so thankful that I found this person. They have saved me many times and I'm kind of stubborn and not easily saved.
Sid is on Medicaid - I told my case manager that I wanted whatever has to be done to start the process towards placement to be done. It takes forever, review by different boards and state agencies, and a lot of red tape, so I figure by starting now, I have one more year with Sid at home. There is always the issue of money. I cannot live without his SS, and when they place him, they take his SS. Right now, their attitude on that one is - too bad for me. Where he goes, his SS goes, and if I can't live on my minimal pension, that's not their problem. It's mine. In the meantime, if they determine, with my doctor's say-so, that I am a basket case that can't handle this anymore, his DC will be increased to 5 days.
Now, the problem with downtown Chicago is that my sister and I have the same missing direction gene. We have actually gotten lost using a GPS. My brother-in-law and Sid used to joke that if they wanted to get rid of us, all they had to do was put us in a car together. IF I can convince her to take the train, we may just go into town. If not, I'll be a happy camper to stay home and play with Rufus - the big black lab that thinks he's a lap dog. He also thinks that my fun fur scarves are pull toys.
Soolow,
My friend ( the one of the OMG! Award blog) sees a wonderful female therapist. I have her name, and if my insurance will cover it, I will make an appointment when I return.
Sid pouted and cried all day; took a nap, and woke up in a better mood. My sister tells me to just hang on for this week, and before you know it, I'll be at her house.
My BIL was on Medicaid and in a nursing home in Oklahoma. The nursing home took his social security check and he was given $30 a month for personal items. He passed away in 1999.
No, she passed away about 3 years before. I dealt with SS, Social Services (Medicaid), the nursing home etc on his behalf. SS direct deposited $30 each month into his checking account. The balance was sent to the nursing home and I was given a monthly accounting.
We had a state veterans home in the town we lived in. I was told one time that if I placed Claude there, they would take 50% of all his income - federal pension and his small security check. I guess maybe that's why nearly all the veterans who live there are single with no family.
Joan, Found this on a web site for KY info updated to 2011
10 Common Medicaid Misconceptions
If One Spouse Goes to a Nursing Home All of His or Her Income Goes to the Nursing Home.
The spouse in a nursing home is allowed to keep $60 per month in Kentucky as a personal needs allowance. In addition, the person may keep an amount necessary to pay for their private medical insurance. The law also guarantees that the well spouse receives a minimum amount of income. For 2011, the well spouse is guaranteed at least $1,821.25 of income per month.
Please don't panic, get your rest. And remember you are in my thoughts and prayers.
This all worries me as I have nothing now. No job, no pension, only DH's SS and pension and little to no savings. Sadly I know we are not alone. I thought at 50 and 58 we still had more time to save for our retirement. Who knew.......
When I return, I will check into it more. The case managers I spoke to were not very nice about it. Basically told me I certainly couldn't expect Sid to go to an ALF and not pay for it. If I didn't have enough money to live on, it was too bad - I would have to make other arrangements and "live within my means", and according to them, that meant whatever it meant. Homeless? Well, too bad.
Eventually, one of them did tell me that the State looks at my finances and determines what I need to live on, and will give me part of Sid's SS if I need it, but there are a lot of review boards and formulas, etc. etc. etc. Honestly, I can't worry about it until I return.
I had a miserable weekend - when he wasn't crying or pouting, he was yelling at me that I didn't care about him. He was yelling that my sister is selfish and only cares about herself. According to his "reasoning", she should take a week off and come here to take care of him to give me a rest. He was making no sense at all. I ignored as much as I could, but finally blew up at him. I sure am glad I waited until 2 weeks before I was going away to tell him. I couldn't have taken this if I had to listen to it for a month.
Joan, most, if not all, ALF's do not accept medicaid. Therefore, they would take all his income - and if that wasn't enough, you would have to pay the additional amount. Nursing homes that DO accept medicaid: They lump your incomes together - and depending on the state you are in, they take some and let the well spouse keep whatever is allowed in that state. So...ALF's and NH rules are different. I'm not aware of any ALF's that accept medicaid - but I may be wrong on that.
Vickie, I agree. My husband was in a nursing home, not an ALF. The elder law attny wanted $6,000 to do the Medicaid paper work. I thought that was steep. The business office at the NH did it for nothing. Hindsight - maybe she wasn't supposed to do that. She's not there anymore. :-)
Yes, Carolyn, most NHs will assist you in doing the paperwork - they did for my Mom, and others that I know. If you have very few assets or low income, they can help you through it. If you are looking to preserve assets - then maybe the elder law attorney is the way to go.
The whole point of this is that there is nothing to keep. There is no money to hide, keep, protect, or to do anything else with. Any money we had was lost in the housing crisis. Sid was approved for Medicaid because he needed to be. All I would like to do is keep living where I am living when he has to go to an ALF or nursing home.
Vickie - Yes, here in Florida, most of the ALF's do take Medicaid, but Medicaid only pays part of the cost. For example, if the room, board, and level of care equals $3500 a month, and the patient's SS is $1500, the spouse would be responsible for $2000 a month. If I had an extra $2000 a month lying around, I wouldn't need Medicaid. Even when we had money, paying $24,000 a year to an ALF would have depleted the coffers in very few years.
I'm not thinking about any of that right now. I'm just trying to figure out how I'm going to make it through this week with all of Sid's crying and yelling at me about how selfish I am, and how I don't care about him because I am "leaving him".
Yes Joan, that is the sad state many of us find ourselves in. I often wonder how dense some people can be (no one here!!) There is a reason people qualify for Medicaid, it’s because illness has already depleted everything we saved our whole lives. Sad :/
And yes, plenty of time to get your ducks in a row when you get back. For now just start packing and keep thinking positive thoughts about your much needed vacation. ☼
The cold, hard facts. If it was between the ALF that was going to take a lot of your money or a nursing home that let you keep it, which would you choose?
Joan, I understand that you are trying to keep your income stream and not any assets. One friend of mine had calmed down after seeing an Eldercare attorney because she was told the amount of income she could keep would be based on her normal monthly expenses. This is another state and I can't say if this lawyer is correct. But it seems that someone should be able to help you keep the income you need to stay where you are.
And you are right to just concentrate on making it through this week and off to chicago.
Joan sounds like you will be in the same boat as I am when you place Sid. I went to talk to the Medicaid person at the Veterans Home today & what I get to keep from his pension & Social Security is $1500 & my Social Security. Now that might sound like a lot, but nor when you have a mortgage, utilities, vehicle payment, credit card payments …..... well you get the picture. I really don't know how I am going to pay my bills. It's very frightening. I might have to go live with my daughter. I am thankful that she & her husband actually want me to come & live with them.
I hope you have a great time in Chicago. I am going to visit my son & his family in Ohio & I plan on NOT thinking about my financial woes whenI am gone. They will be waiting for me when I get back!