Not sure what to think... - AgingCare.com

Not sure what to think...

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Here I go again....ugh. Not sure what to think...wondering if my honey is...how shall I put it...fudging. All morning he has been telling me can't lift his legs...can't move without help... can't put the pillow under the edge of his bottom. But a short time ago I walked in and he was rearranging his pillow that he sits on, leaning so that he could move it and when I pushed his foot stool back up...he raised his legs (about 2 ft + off the floor and laid them on the foot stool without help. Really!!!!



When I told him that I had talked with the heart failure clinic and let him know appointment is about a month off and am working to get him in sooner he went ballistic and told me not to push it. Ugh!! Told him if we can get him in sooner am going to so that he can start feeling better.



I feel guilty to think that he might be fudging some on how he feels, but it makes me wonder. Right now I get him up from bed, chair, couch and toilet and wait on him hand and foot. If he gets better he knows that will not happen. I did talk with the cardiologists nurse and she has advised that his heart has worsened as has the fluid in the last two weeks. He has had little to no activity in the last 6 months though. I have tried and his doctors have told him he needs to be as active as possible. Not sure what to think anymore. Just keeping on as I have been and hoping they get him in to the HF clinic sooner than the original appointment.
Has anybody had a family member that has acted this way? Thanks....

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Hi,
Well the question as to whether my honey is fudging has been answered. Around midnight had to call 911 to have him taken to the hospital. The fluid is moving up into his lungs. He weighed 187lbs before the edema started and he had lost about half the fluid he had retained in the last few days, but was still 238lbs when they weighed him at the hospital! Thank heaven he finally relented and allow himself to be taken to the hospital. I am so thankful he is there as I know they should be able to help him.

Once he got there he was being verbally mean to the doctors and nurses and when I got there it got worse. He told me that I finally got my wish to get him in the hospital and told me to leave he did not want to see me and did not want me there as I was not doing anything for him. I ended up crying though I tried not to. I stayed and he finally settled down though he was derogatory the whole time I was there. The cold steely eyes were back. (I have seen him back down quite a few people with that cold look...not me.)

He is cognizant and in full possession of his faculties so I am not sure why he is trying to alienate me (until he needs something). Up until recently he has always been loving and caring toward me. He was making fun of my back problem and the way I looked (didn't have time to shower and was in slacks and a 20 year old shirt). I know he is scared and frustrated so I did my best not to react to his treatment of me and his comments. My honey has no mobility right now (my back can attest to that) and was mad because I could not help him when he needs to go to the bathroom. He told me I was no good for anything. I told him the nurses would take care of that. That was the mild portion of what it was like. Hopefully he will be in a better mood when I go back to the hospital later today. He has never talked to me this way but I feel myself starting to build a protective wall around me. I am just afraid that after 30 years of loving this man that he will alienate me to the point of saying "I'm done". I am fighting this though and am determined not to lose that love and patience. In the meantime my heart is breaking.

Sorry everyone, I hope my post makes sense as I have only had about 3 hours sleep in the past 2 1/2 days. Y'all take care. Heading to bed after I run some errands this morning. Have a great day.
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Ahmijoy… I agree, all we can do is the best that we can. Many hugs to you too.
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I understand. My hubby started to get tired of the testing, poking and prodding about neurologist #5. Deep,down, I know he feels his lack of mobility is all in his head. He’s said that. Maybe he should have gone for psychiatric therapy instead.

None of us can predict the future, I guess. It’s scary but all we can do is the best we can, right? Sending hugs and more hugs.
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Ahmijoy...It is very scary. I am kind of in the same boat you are. If something happened to me I can only hope that his brother and sister in law (all of us are very close knit...they are family to me as well as my honey) would take him in, but my 4 legged "babies" I don't know what would happen to them. As to the house it is my house and since we are not married, my brother and daughter could sell it but my honey would have no claim on it. I have had 12 strokes (2 major at age 29 and 31-2 year recovery on each), a seizure disorder which is dormant right now, a disabling bad back, diabetes and was diagnosed with heart failure (oh I forgot borderline high blood pressure) so I guess you could call me a ticking time bomb. I keep fighting through it and will until they pronounce me as gone from this earth. That attitude has helped me make it through bad and rough times.

They can't figure out what is causing his weakness, except possibly the recent edema but he was having problems before that time, and he will not go for additional physical or psychological testing.  But after he got his pacemaker/defibulator implant in December he told me he was giving up -that he was now an old man and has proceeded to act like it no matter how much encouragement I have given him. Since then he has gone down hill. What worries me most is I am not sure physically that I can deal with the demands being placed on me for an extended period of time. It would break my heart if I lost him or had to put him in graduated assisted living.
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Dusti, that’s one of the scariest things about my situation too. What if something happens to me? My BP is pretty high. Bad back, bad shoulders, fibromyalgia and arthritis, etc. Who takes care of Hubby? I had a dream the other night that he actually was able to get up. They’ve never found anything wrong with him. Nothing shows up on the tests he’s had that would prevent him from walking. But if I go down, well, my daughter has 2 special needs kids and a lazy hubby. Son has a new baby and his wife doesn’t like us. They would NEVER take on hubby! He’d have to become a ward of the state. Doggie would go bye-bye. House would go bye-bye. It’s very scary!
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Hi HolidayEnd and Jeanne,
HolidayEnd… sounds like you and your husband have a very special relationship and not only does he think of you and your best interests, but you think of his as well. So glad that things are improving for you. Your post made me smile. Sometimes I think that my honey (we are not married) is on the level but there are times that I question that as after 30 years I can tell when he is fudging on something, but I can't take the risk that something is really wrong. Know he gets lonesome and so do I.

Jeanne,
I understand exactly what you are saying. I am looking into a third party caregiver to come in and help with him and some very light housework as soon as I can afford it. As for right now I am doing the leg work to get the information that I need. So wish we had family living close. I know that with my health problems, I will not be able to hold up to the demands(as I have been doing) on a more permanent basis. The EMTs from the fire department asked me if the doctors are aware of the amount of swelling that he has. I advised that they are. They asked if I am his POA and I advised I am, but at this time it is not in effect as he is cognizant. (spelling?). They understood.
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Dusti, I don't think I made my advice clear. Tell him you are going for R&R and THEN GO. Don't make idle threats.
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I’ll confess, I’ve not played ‘possom’ With my hubby such as claim I’m sicker than I am but I’ve been glad when hubby takes time from his job to stay home with me (paid time off). It’s an opportunity to spend all day with him. I do get lonesome for him.

But I think I’ve finally begun to get better and he’s so happy. It’s time I got stronger and got back at living everyday life.

My hubby will make me get up and walk a little, ‘for my own good’.
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Hi Jeanne and Ahmijoy….

Ahmijoy…. thank you for your response and the hugs. (smile)

Jeanne....I have told him this, but he still refuses to do anything that will make it easier on me. He fell while trying to sit down on the walker (thank heaven he landed on the carpet so it was softer) just a little earlier today and I had to get the fire department out to get him up (this is 4th time in less than a week). The whole time after he got up from the toilet he kept telling himself he can't. And sure enough he fell. I wish he would start saying "I am going to do this" but he keeps telling himself he can't. Sometimes I think he psych's himself out. But he is putting his legs on the footstool by himself today. His confidence is totally shot and instead of trying to overcome it he seems to be in the poor, poor pitiful me frame of mind. Anyway, long story short, my back is completely out again and I am now back in my brace and back on my cane. Ouch! Threw it back out trying to help him when he was falling. He is now mad at me as I have told him I may not be able to pick up our groceries until tomorrow unless my back eases up. I may see if they can deliver them.

Thank heaven for my study. When he was acting like a horse's patoot toward me after the firemen left, I headed for my study while he was resting. He said running off again and called me a coward. Advised him when he acts like a horse's patoot and gets verbally mean, I will not stay in the same room with him as I am not going to argue with him nor put up with his verbal abuse toward me. (We have argued more since Nov than we have in 30 years). I am waiting until we find out what the Heart Failure Clinic has to say before making any decisions on my part as my back can't handle this being a permanent issue.

I had told Steve a number of years ago that if he got down to where he could not take care of himself and had to have 24 hour care he would have to go to a rehab facility as I have to work and I could not care for him 24/7. Guess he forgot that conversation. I refuse to lose my home and all of us end up on the street.

Now to see what the rest of the day brings. Thanks for the shoulder y'all. Sorry to complain and unload on y'all as you have enough going on. Scares me to death every time he falls.
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"He would never go to a transition unit."

Never is a very long time, Dusti. Let us say you have another stroke (please don't) and you have to be in the hospital several days and then in rehab for 3 weeks. What is he going to do?

What if you say something like this, "Hun, I'm going with Ruth to her family's cabin for 10 days. We leave on the morning of the first. I thought you'd want to be able to plan ahead."

He can decide things like he's never going to a care center, even for a limited time to regain strength. He can decide not to visit doctors, or to visit them and ignore their advice. He is a competent adult. His life. His decisions.

And you are a competent adult, able and entitled to make decisions about your life. There are very few "nevers" for you, unless you put them there.

My husband had CHF and dementia. I told him, "I will never abandon you. Even if at some point you need a care center I will stick with you and be your advocate, through sickness and health, for better or for worse. And you need to do your part, too. We can get through this together." This resulted in his attending an adult day health program a couple days a week. It was his decision; he did it for me.

This is just a reminder that as you consider what to do with/for/about your sweety, you must also keep in mind your own physical and mental health needs.
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