After feeling really exhausted for a long time (what caregiver doesn't?), I found a new doctor, who ordered some tests. While I was getting ready to go pick up DH at the end of a respite stay, the doctor's office called and told me that the tests had shown I have congestive heart failure. I was already dealing with a number of other health issues, including kidney disease. But this news pretty much made me feel like the plans and dreams I had been holding in my heart for "after"--to keep me from losing my mind right now--will never be.
Obviously my time as a caregiver at home will be coming to a close. Now it looks more like I may be needing a caregiver, myself. It's times like this when I really miss my husband. Not the husband I have now, who barely remembers that I told him about this, but the husband who would have been very concerned and would have gone to the doctor's visits with me--who would have driven me to the doctor's office!-- and supported me, and taken care of me.
As I sit here, writing this, I have to wonder how much twelve and a half years of unrelenting stress and fear and grief have to do with this new diagnosis. We're not machines. It seems realistic to think that eventually a body will suffer damage from the toll this disease takes on caregivers. I just really didn't expect this. Guess I was dumb to NOT expect it.
The one family member I shared this medical news with said yes, we're getting to that stage of life where these things happen. Amazingly, I felt no comfort whatsoever from that comment. Actually, we've gotten to the stage in life where these things have happened to me, but not to her. I guess it's like caregiving--if you're not in the situation, it's hard to understand how it feels.
To my friends here at Joan's place, please let me say (and I guess I speak with the voice of experience here) that maybe we shouldn't put too many eggs in the "after" basket. We need and deserve to have a life, too--right now--even if our spouse is ill. We never know what the future will bring.
p.s. Evidently if you have heart failure, you're supposed to avoid stressful situations. That made me want to laugh hysterically. With caregiving, I feel like my entire life is a stressful situation. And I know that even placement is not going to make my life peaceful and calm.
My heart goes out to you Jan. Nothing is written and no one on earth knows what will happen. It is time for you to TRY and watch over him without nearly as much personal stress. You should consider talking to the place he ends up so that that staff is aware that the family has two conditions to deal with. Consider the necessity of stopping information below a certain level reaching you (because it induces stress) and try to find what can help you overall get to a lower stress level.
I worry about absolutely everything. I don't sound like it is all. I so very much hope that what you find about your future is that through very hard times it worked out better than you thought. We truly don't know.
Jan, CHF is very common, and can range from very mild to very severe. Basically, the aging heart is tiring and weakening, and enlarging as a muscle to be able to continue to pump the fluid volume through the body. In a way, you could call it just another sign of aging, like dimming vision and stiffening knees.
What symptoms do you have, and what meds are they putting you on? (If you don't mind sharing...sorry, I'm being nosy.)
Just to add to Wolf and Elizabeth's comments: my mother was diagnosed with congestive heart failure at age 75, had one episode of digitalis poisoning (medication used for heart failure), took a two-week respite from medication, then went on a lower dose. She died of a stroke at age 90, two months after surgery for a fractured hip. I agree with you that we shouldn't put too many emotional eggs in one basket. That includes investment in unreliable people. I've now reached the age (and the problems that come with it) where I am beginning to think that every day is a bonus. This definitely has its upside. I'm more apt to walk away from troublesome people and situations.
As Elizabeth said, CHF is very common. My grandmother, aunts and uncles all had it some worse than others. My mom's worse problem was fluid buildup around the heart. Because of family history I have been taking higher dosage of CQ10 which is suppose to help the heart. Time will tell if it does.
With kidney disease probably watching for fluid buildup will be one of the most serious to be on guard for. I am believing you will be fine. Maybe not out doing what you had thought, but you can still have a life. This is definitely an example of not letting this horrid disease of AD take two lives.
The guy that hb would go walking with that just left had CHF and COPD. He is only in his 50s, is on breathing treatments for the COPD but still tries to keep as active as possible including RV traveling.
Closing note: hope you can get your husband placed very soon so you can start taking care of you better.
“As I sit here, writing this, I have to wonder how much twelve and a half years of unrelenting stress and fear and grief have to do with this new diagnosis. We're not machines.” Very well put, Jan.
This is a real blow, but there might still be a time for you after this AD war is over. My mother was diagnosed with CHF at age 74, six months after my father died of Alzheimer’s. She died at age 98 and until the last week of her life, she was intellectually active, followed current events, and was fully involved in family matters. Although the heart condition slowed her down, it was not nearly as troublesome as her arthritic knee. She lived with my sister, but except for grocery shopping (and after age 87, driving!), she took care of herself and did not have a caregiver. So do not lose heart. But you’re right to try to seize the day now if you can.
Jan, I cared for DH for 14 very stressful years and when he died, within 9 months I sold my house,everything I had, really and relocated to FL. Seven months later I had a heart attack and stroke and was airlifted 70 miles away. I had no symptoms, all my labs have always beem excellent. My cardio told me it was due to the horrid amount of stress in my life over the last years of caregiving, losing my son also during that time. BUT.....I have recovered wonderfully with the help and caring of a wonderful man I met before this event. We are together and I am doing well and happy. Reduce the stress if you can and you'll be fine.
Jan, I'm so sorry that you are going through all these health problems on top of struggling with your husband's long, long battle with Alzheimers. Just want to say that you are in my thoughts and prayers, and I hope that things will look brighter soon. Wishing you the very best,
Jan, your post kind of brought tears to my eyes...there aren't any guarantees of anything, are there? Like you, I think a lot about the "after", but who really knows. It helps to keep me going though, helps me to keep from giving up entirely.
As Vickie said, all of my labs have always been perfect - the doctor practically does a happy dance. However, at almost 74, I know that it won't always be perfect for me. Maybe I count too much on that...
As another said, each day is a bonus....sometimes it's mighty hard to see it that way, but I try, as we all must I guess. I still have my eyesight & my brain (well, that debatable!!), so as long as I can see & think, I'm as okay as I can be at this point.
I'm feeling so much the same. I fell, ended up in hosp with rehab and beginning of pnemonia. He was in same hosp recovering from a stroke. We spent 6 days as "roomies" in rehab. I miss the husband I used to have, who would (could) care and help take care of the problems. Even the new medicines s a hassle. They have told me I have to have a knee replacement and my main worry is,----what, who will take care of him while I am having that done and how will we manage when we get home..I guess maybe we shouldn't consider the "after"----taking care of the now, may be all we are able to do.
I do find that at 13 and a half months out, it is much easier to do the basics...eat better, get more sleep, lots of walking, and a little strength training. I'm even doing a better job with my teeth...got a water pick and a sonic toothbrush...wouldn't have fiddled with that stuff while still busy with DH. And when I'm walking, that's my meditation and thinking time; also, I'm in church every Sunday, which had to go by the wayside when I was caregiving. So my head is in a better place, although I still can get very "blah" and mopey. It may not seem like it when you are embroiled in caregiving and cannot take care of yourself the right way...but there is definitely a life after Alzheimers for the caregiver.
Elizabeth - I'm just past the 3 month mark, but because of all the additional stress, have been, as Myrtle says, obsessed with trying to get answers. But, I finally started yesterday walking (30 minutes to start) and exercising (Osteoporosis Tape) for 15 minutes per day to begin. Eventually the tape will take 45 minutes, and I'm planning to work my way up to it in about 2 weeks, plus much more walking. I am so out of condition. Don't know about my head - sometimes I really wonder ... I've been trying to learn WORD 2013 and Windows 10 and it sure it tough going. I will keep on, though, as I need it. Same as you with my teeth - I used to be so careful, but that all went by the wayside, and is another thing I have to be more careful about. It is so good to read how you are progressing. I think you give all of us the courage to keep trying.
Elizabeth and Marg, I am almost 6 months out and I am exercising and working on myself. Last night I started a new grief group facilitated by Hospice and recommended to me by my Hospice social worker. I am thrilled because I think once I finish the 6 week group I have decided I am pretty much done with groups. I have been in Alz groups for 7 years and I decided it is time to move on. I do not want Alz to define the rest of my life. I am considering learning a new language but have not proceeded with that yet. Any suggestions for the holidays? Honestly I am not looking forward to it. My kids think I should "be over this" and think something is wrong when I decline going to family events. Elizabeth like you I still get "blah and mopey" and some days are pretty "gray" but I know it will get better. This is really a whole new journey moving forward. Guess we all go at our own pace.
CO2, if I could get ahold of your kids, I would just give them such a good shake. How dare they think you should be "over this." Puh--leeze.
For the holidays, I find that the virtual Christmas Lodge that Wolf opens is a big help. Like you, I don't want to be defined by Alzheimers forever, but I do look forward to dropping into the Lodge--if only per computer--and mingling.
The other thing would be to be very gentle and kind with yourself through the holiday season. I think just doing what you need to do for yourself to have an enjoyable and peaceful time is the way to go. You may have to just politely not be manipulated into doing what others want to do...or what they think you should be doing. I would stockpile some good treats for yourself...whether it be a special tea, a stack of paperbacks to be savored slowly...some new holiday CDs...maybe buy yourself a beautiful new fleecy afghan to curl up under. And in terms of baking, shopping, decorating...take it slow, and only do what feeds your soul. You're going to be fragile...I don't see how you possibly could not be...so treat yourself like an honored and treasured guest, nurturing yourself and assessing yourself for what your needs are...and then meeting them.
There are different levels of congestive heart failure. You can have it and not even have any symptoms. That's obviously the early stage. Unfortunately, that is not where I am with the disease. By the time the symptoms are pronounced, the disease is advanced. With caregiving responsibilities and having to change insurance companies and doctors several times during the last few years, all this fell through the cracks until it was too severe to ignore. My cardiologist said that we will focus on trying to keep it from getting worse.
Meanwhile, I have added another big job to my to-do list. In order to eat a low-sodium diet, I will have to cook everything from scratch, including bread. (You might be surprised by things that contain sodium, like raisins and applesauce. I certainly was.) The other night we had no-salt-added meatloaf and mashed potatoes. I guess it's an acquired taste. This might be the best-ever diet for weight loss, because it does not encourage you to overeat because something tastes so wonderful!
Jan K there are lots of seasoning for no sodium diets. You can use garlic or Tyne to flavour your mashed potatoes. Chives and basil and oregano. I have not eaten salt for 25 years. I do have trouble when I go out but make all my own meals. I live in Canada and lots of things you have we don't and vice versa. Check in the spice aisle. Likely lots of comments and suggestions coming from others.
Hi Jan, remember that fresh fruits and vegetables, or frozen, are OK. I think throwing a bag of "steam in the bag" veggies into the microwave is easy-peasy. I like to buy fairly non-perishable fruit..for me it's one piece of fruit per day--if I'm shopping just for myself, I'll buy four apples and three bananas...something like that...to last a week with no waste. In terms of cooking from scratch, I'd recommend cooking in batches of four portions, eating one, and freezing the others for meals within the next month or so. Keep it as ultra-simple as you can...devise some easy, enjoyable meals that work for you, and put them into a rotation. Have pretty much the same things for breakfast and lunch, so you're not always re-inventing the wheel. And I agree with Jazzy's advice about spices. Also recommend lemon juice for flavoring. Everyone will suggest Mrs. Dash. Personally, I hate Mrs. Dash. lol But it's worth a try.
I don't recall if you've told us what your husband eats when he's home, but basically, just double whatever you're making for yourself, and give him the same thing as much as possible. (Fourteen pieces of fruit for the week, etc.) Larry used to eat tons of sweets and junk, so I kept that stuff in a separate cabinet. I trained myself to think of it as being behind the Berlin Wall or something...I just didn't go there. It helped me stay somewhat healthier.
Others will probably be along with suggestions. We all are interested in food, that's for sure. Anyway, gotta keep ya healthy, Jan! We're on it!
Isn't it amazing how big the cracks are and how many things fall thru them, when you are majoring on care giving. Tomorrow seems like the most useable word. We are both back home and trying to find a new normal after a stroke for him, and knee problems for me. I wish I knew how to find normal-----one day is up and I can be so positive and the next, like yall said, so down and blaa. I am riding the stationary bike, sure boring.
I recently had an artery burst in my lung and the procedure they did to fix it, blocking and killing off the artery, and the condition that caused it, has a dismally high rate of reoccurrence. Western medicine doesn't have a permanent fix, so I started looking at other systems that believe they can heal it. Chinese medicine does, and described the bleed I had as a stagnation of Qi or Chi (life force energy) in the lung and heart.The Chinese believe the cause is grief, sadness, and worry - exactly what I've had a decade of, in between episodes of full emergency living with all his crisis. Honestly I think my body just tried to give out - couldn't do it anymore (I described feeling broken before this health crisis). I was in the hospital for 8 days and it took 6 of them to find the bleed. My greatest risk was asphyxiation, as each episode of the the artery bleeding filled my lung with blood, and feeling like I was drowning until I could cough it out and it clotted again. The other risk was it becoming uncontrolled and bleeding to death. They had me very sedated and at one point I just had to pretend it was a vacation, since its been 13 years since I have had one. I also really thought I was going to die. And though I took such good care of his affairs, my own were not in order, nor had I made arrangement for his continuing care.
Since I cannot change the situation I am in with my partner to lessen the grief I've felt which has been more intense lately, I am grasping for how to change my own life, as this way of living is not sustainable for my body. I realized that this grief and care taking can actually kill us. Stagnation - yes, my own life has stagnated for a decade, after the bottom fell out of our plans and dreams and everything changed against our will. Its not like we are stuck in some grief and can't move on - its that we are in a situation that we can't change. The Chinese medicine system believes if the life force stagnates, disease is created.
Mariposa, I am so very sorry for all of this. Life just does not seem fair most of the time. Although my husband has passed I am now in a bereavement group and am learning a lot about grief. The bottom line is most people do not deal with their grief (Most people do not want to confront the feeling associated with grief) and so "getting on" for them is basically getting back to the daily stuff, telling oneself they have moved on, and staying busy, busy, busy. When we do not express or acknowledge the feelings they will come out in other ways (unfortunately in our bodies, or other behaviors that are not positive like addictions etc) It sounds to me like you are at a cross road here-- I cannot tell you want to do but whatever you do now must be something that will help you. Maybe sit down with pen and pencil and make a list of things that you have the power to change in your life that will benefit YOU and no one else. I had to do that when I placed my husband. Had to chose between me or him. Sending your prayers. Be well.
Mariposa, I also am so sorry that you have had to go through so much. Loving someone can be one of the most wonderful, but sometimes, most difficult things we have to face, so my heart really goes out to you, when you are trying not only to look after yourself, but your partner who is in such a bad way. Our own daughter has blood clots in her lungs, problems with her liver, epilepsy that began when she got pregnant 21 years ago, and which is still a constant problem, along with all the ramifications of that, etc., i.e., the medications she has to take, and the terrible side-effects they cause. I hope, sincerely, that the Chinese treatment that you have chosen helps you to cope. Are you taking their herbal remedies, or such things as meditation/exercise? Our hearts are with you.
Thanks folks. If you can find a traditional chinese Dr. they use herbs and acupuncture to get the Chi/Qi (life energy) moving again. Of course I use regular western medicine too. I am hoping it doesn't reoccur. 35 - 55% people do in the medical literature. I do meditation. I am getting over the anemia and feeling more of my strength. I think this crisis somehow blasted me out of the depression I'd been in.
What I do need to do is designate another to be POA if I were to be out of commission, with a second signature on the checking and information as to where his funeral trust is and what his directives are. He did want one of his two best friends to do that if ever need be - but I need to do the paperwork. In addition, I need to do mine too, as I sure don't ever want to leave a big mess for my parents if something were to happen to me - they are in their 80's.
I just really agree with what Jan says in her original post about not putting off life - and the challenge of dealing with the stress. Though both of those seem almost impossible dealing with AD. Whether they are in a NH or not.