On Tuesday, I spent the day at the Texas Heart Institute for my heart checkup and all of the tests that involves. X Ray, EKG, Blood Work, Echocardiogram, Nuclear Stress Test.... Results were so-so. I was diagnosed with Viral Cardiomyopathy and Congestive Heart Failure about 6 years ago. The tests revealed that I am holding strong in regard to my ejection fraction, but there is indication that I have blockage in some of the vessels inside my heart. More tests next week with a heart catherization as soon as I can get a full time sitter for DH and other ducks in a row. Most important, the doctor stressed the need for more rest for me. Ten hours a night, he suggested. (Average 3-4 hours now). Today I told my DH that Dr. W. said I needed more rest and he needed to remember that when he wakes me up every time he sees me sleeping. Why? he asked. I replied ( perhaps, not too tactfully)..."Well, if I don't get more rest, I might have a heart incident and die!". He replied, "Good, I want you to die". What? I asked, "What did you say?" He repeated, "I want you to die." I said, "You don't mean that. and that's not a sweet thing to say to me! Shame on you!!" He shrugged and walked away. Later I came back into the Family Room and he greeted me with his usual "I LOVE YOU..LOVE YOU LOVE YOU -LOVE YOU!!!". Big grin, arms stretched wide waiting for a hug. Of course, he got his big hug.
I know it was the Alzheimer Devil speaking earlier, but to hear the words coming from him hurt just the same. I am broken hearted over my granddaughter's health situation - so emotions are raw. Her transplanted heart is failing, My own heart is challenged ... and my 'sweetheart' breaks my heart! sigh.
I'm so sorry! Do yourself a BIG favor and DON'T ask him his OPINION on anything because he won't understand what he is saying. He was repeating what he thought you wanted to hear, not realizing what the words meant. From this point on, try not to say something you don't want him to repeat. Remember that two year olds are like recorders - what they hear, they repeat...the same thing applies here. This way you won't have to hear words that kill you! You deserve to only hear the words of love!!!!
When I have been gone or tell DH that I am going out, he will often say that he wants me to leave and never come back. I KNOW that what he really means is that he is terrified that I will leave him alone and so, wanting to keep some semblance of control, he voices what he is afraid will happen. When he says this I reassure him that I will always be there for him. Sounds convoluted, but this really is how AD-sufferers often express their fears.
Probably your DH is terrified at the unthinkable thought that you might die. This doesn't solve your problem of how to get enough sleep . . .
Nancy, that almost made me cry. You really need some major hugs. You've got so much to worry about - your grand-ddaughter, husband and yourself. I hope something nice happens to you pretty soon. Gosh,your plate is overflowing. I'm so sorry for everything that's going on in your life. Makes me feel like mine are nothing compared to yours.
So sorry for all you and your family are going through. When compared to you, I have no problems. I hope you have friends or family nearby or can have agency help so you can get the sleep you need. At times like these, the "alz complex" where all of us could be to help each other sounds good.
Nancy, like the others have said you know in your heart that he didnt mean that. dementia causes words before actions and alot of the time they can hurt emotionally. if its possible you should have a heart to heart discusssion with your daughter living the closest and ask for some help. maybe she would be willing to take DH for a weeked once a month or at least visit to give you some free time off from caregiving. the added stresss of grandaughters issues factored in are even harder now. as you know more than anyone all this added stress is doing no good for you and your own cardiac issues. time to get a grasp and get that agency help Asap and into helping you out more on a weekly basis. i hope you dont put these things off and get the ball rolling so you can get back to the drs and your own health. all the kids should know of your personal health issues now so they can step up to the plate. hope it all moves forward soon. we are here for any venting as you know. divvi
Nancy--My practical side is coming out. It looks like you've come to a turning point in your husband's care. What is your plan? It sounds as if you need a night shift person, and someone to supplement during the day. You've mentioned that your cleaning person isn't totally filling the bill. Here's an idea--if you bring in several aides to help, you may be able to have them do the bulk of the regular cleaning while looking after your husband. That way, perhaps you can only use your cleaning person sporadically--to do windows, heavier things that the aides won't do. That way you can put the cleaning person's expense towards the aides. I have found that using an aide 20 hrs a week, she has lots of time to do housekeeping and still keep an eye on my husband.
Nancy, you are in my thoughts and prayers. I checked the website for your granddaughter and left her a message. She and I share the same birthday, so she must be even more special. I wish I could do more for you. Marsh
Dear Nancy, I may have my platter full, but so do you, you MUST take care of yourself. Whatever it takes is what you have to do. I will continue to pray for you and your family. Some nursing homes have respite beds, would this be an option for your DH while you have your cardiac cath?
Nancy, AD is a monster and our spouses turn into people we don't know, yet we love and feel such responsibility. Take care of yourself and find others to care for him. You cannot care for him if you are sick or not there. I will keep you in my prayers.
Dear Nancy, too much for any one person at one time. I'm sending you positive energy. Also, I just learned from a new doctor that it is possible to check my H into a nursing home for respite care for a week. Is this an option for you? I know I have to pay for it and it isn't cheap but in the situation you a facing with your heart tests, is there someone it is medically necessary? I hope you have a sympathetic doctor or social worker to steer you to some services that might be available for you. I finally found one. Carry on soldier.
Nancy, as soon as Caring Bridge accepts me, I'll be leaving a message on Krissy's site.
With all that's wrong with your hearts, the most important part is 100% Okay. Your hearts are the home of all the love you have and share so generously.
I add my prayers for good outcomes, for both of you.
Nancy, please know that I am thinking and praying for you and your family during this time of need, and wish you the very best of outcomes for all. ((((HUGS))))
I wonder if your DH even knows what the word "die" means. If he says it again, I would ask him if he knows what that word means. I know my DH didn't know what the word married meant, and he didn't know what an anniversary was. This disease takes everything away, they don't understand us and we sure don't understand them.
I only wish the best for you & your dear grand-daughter. As others have said, our AD LO's speak a lot of nonsense, sometimes it seems personal, but really it's not. My DH would go off on tangents that had nothing to do with reality, about me or anything else--what your DH said is not reality--just more AD verbal garbage.
I well remember the snatches of sleepless nights, the exhaustion. I would send you some of my sleep now if I could. But you do have my understanding.
With the short circuits going on in their brains, they may want to say one thing and something else comes out. But I understand Nancy's hurt and her reaction to what her husband said. Another example of "it's the disease talking", but it's hard to take when it comes from someone you love and you are literally sacrificing your own well-being to take care of them.
Here come Friday prayers and good wishes to you Nancy. Just finished leaving a message for Krissy on Caring Bridge. Try to find a little time to "take care of Nancy".
I've left a couple of messages for Krissy and have kept up on her progress. She seems to be in the very best of hands. What a gift to have such caring caregivers surrounding her. Still praying...................
Thanks to all of you who have posted on Krissy's site. Krissy and I have always been very close... This is so hard for all of us...even though we have been through the transplant twice before, "one never gets good at it.". She is in the best of hands and she does have lots of people taking care of her body. All we can do is feed her spirit. Your posts do that. Her mom and my son have been divorced for about 12 years...(and her mom has been married three times since then.. ) - I'm so blessed that her mom says she still loves me and has been very good about keeping me closely informed.. I have worked very hard to maintain a relationship with her family, because I love Krissy so much. I have to get my appointments set for additional tests for me, and with her precarious situation, I just don't know what to do. I DID cancel the neuropsychologist exam........for DH.
Nancy: Thanks for expressing me recent problems so well. My DW says some of the most hurtful things and then a few minutes tells me how much she loves me. I just can't switch gears that fast and forget that it happened. It seems to me that the other folks here handle these situations better than I do, but, I'm trying to learn. Always was a slow learner. When she told me last night that she wanted a divorce, it still hurts and the 'I Love You's' didn't make it well.
I admire the way you handled it with the hugs. I can't do that at that moment. Some time has to pass.
Oh Well, I tell myself that I can get better at this, but, I don't know if I beleive me.
Nancy, My thoughts and prayers are with you and your family at this difficult time. Have you been in touch with the local Alzheimer's Association group ? Our local representative said that they have a small amount of funds available for respite - perhaps yours does also. You already know that in order to help others you must take your oxygen first. Hugs!
Dear Nancy: my prayers are with you and Krissy...you have to take the time to think of YOU>>>if you could put your DH in a N.H. just for a short time, it would be the best thing..Hugs Rosalie
Oh, Nancy, I'm sorry to have been incommunicado when you're having so much going on. Courage, mon amie! I think the others are making the right suggestions: you have got to get yourself some respite. Thank heavens you cancelled that neuropsych idiot!!
I was given the names of three Home Care Agencies last night that my friend has worked with and says they train some of their people specifically for Alzheimer's Care. One actually has their aides "intern" in an Alzheimer's Care Facility for a while so they can observe and practice care with trained staff. I will, I promise, get a company on line and schedule them to come in when I have to go back to the hospital. If the first test shows a blockage, he will want to do a catherization procedure and at best, that is ONE overnight stay. And YES, I cancelled the "6 hour" psychological test and his meeting with the neurologist. I used my medical situation as an excuse and said I'd reschedule later. I won't. But I'm a wimp, and cannot simply say "You are not helping my husband and we don't want to put him through this torture!" I was thinking that if Dr. N., charges $3600 for this day long test...and it's just for HIS research and HIS benefit, he should pay US...just like the other studies do. (I got my check from Oregon today!!) Since he told me he 'wanted me to die", I have had a cold place in my heart that is allowing me to approach this next step with less emotion. Keep nudging me along, friends.
Bluedaze, the problem is I should have done this a year ago. I kept trying to do everything myself, skipping MY doctor appointments, stopped walking becasuse I couldn't leave him alone and he can't walk well, and when I went to the doctor last week, not only was my heart showing new problems, my blood glucose was 148 - (officially 119 is the start of diabetes) and they thought I had a thyroid problem (New test says it is OK). I thought I was being a good steward of his money by waiting as long as I could before we commensed bringing in help. What's the old saying...When you decide to make the move to get professional help or place them in a care facility, it's a year beyond the time when you should have done it. I'm living proof that caregiving is hard on one's health.
Marilyn in Md. has been pushing me to do this for months. OK OK OK, Md in MD, I'm doing it!!! (grin)
Nancy B - Don't be too hard on yourself for not taking care of things FOR YOU when you should have...we ALL are guilty of serving others first in this journey...But as someone else said, we MUST put on our own oxygen masks first!! Otherwise, we may not be around to care for those we love...Your love is obvious for your DH...Hang in there & do continue to take care of you! Prayers going up for you, your g-dtr, and your family. Much love, D
Nancy B. Healing thoughts and prayers your way for you and your grand daughter, and as always for your DH. You are strong, caring and loving and will come through this! (((((((((((hugs))))))))))) and love, Sue
Nancy B my thoughts and prayers are with you and your grandaughter,I know it`s hard but what dh said , maybe he meant to say, I don`t want you to die, sometimes they can`t get the words out right, I have learned to just ingnore something hurtful and try to think of the words my dh would have said to me before AD . be strong for yourself and that beautiful grandaughter. Gail
Nancy if you can manage financially try to start the home aides now so they have a good feeling how to deal with your DH before you have to have them stay overnite. its take a few visits to get DH adjusted to getting along with and feeling comfortable with the aide we have now. plus you may want to try a few different aides to see which he gets along better with so start early rather than later. some they sent to us i did not have back. some work some dont. it takes time. take care of yourself now. divvi
I will begin interviewing the 3 companies tomorrow. I worry about him letting a woman nurse help him bathe,..and so I will look for a male nurse if at all possible. Also, a male nurse can help me take him to the bathroom when we have to go out. I have made the decision to bring someone in, for the same reason Divvi said...so he can gest used to them, and be comfortable with them when and if I have to go to the hospital for the heart cath.
I have friends who say they can come for a little while to "sit", but that's not what I need. I need someone who will get him bathed, shaved and all of those jobs. Friends don't do that sort of thing.
Nancy i hope the male aide goes better than us. my DH didnt find it amusing at all a man wanted to pull down his pants int he bathroom and not leave:) knuckle white fists latched onto clothing.
so he's adapted much better with a lady who knows her business and can get the job done too. watch for signs. you will know if he likes the guy or gals. divvi
Good point, Divvi. I've often said that DH behaves more like a 3-4 year old, cannot cut food on his plate, eats with his fingers, temperment, potty accidents if not reminded to go to the bathroom every hour or so, and many other things. When he was growing up, his mother had a very large black woman who worked for them ..for about 10 years. She was a loving woman and hugged the 3 children and spanked them when needed. He loved her so much. and often would tell things that "Daphne said"! Maybe, since he seems to live in that era now, he would not question an authoritative black nurse. I was so worried about that until just a few minutes ago and with your post and briegull's...I feel more confident. I DO know he cannot understand women with heavy language accents.
Nancy, I am going to add my comments to divvi's. I had the same experience and still do. My DH responds much better to female caregivers versus male ones. There are a couple of male aids where he is and I notice that he is much less comfortable with them. The aids tell me that he is fine with them, but I have watched my DH and he really isn't. I have also found that he responds better to older women versus younger ones.
You will know as you meet them and see how he is with them, which ones will work better. Good luck on this.
Mine loves Andrew, our 25 year old CNA. But he also really liked our first woman - who lived across the state and quit when last winter came. The second woman, not so much. And I hate to say it, but I think it was a class thing. The second woman, I guess Irish, so it wasn't an ethnic thing, was just basically pretty uneducated and it showed. The first woman and Andrew both speak good English and enjoy talking to him, and he to them. The middle one was constantly talking - shouting - to her family on her cell phone and he hated that. So it really just depends on the individual.