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Topic Won't settle down Go to previous topic Go to next topic Go to higher level

By lynn On 2009.12.13 19:43
My husband won't settle down. I'm at my wits end because all I say is sit and he continues to wiggle and get up from his chair. Then, he falls. I just feel like I can't keep him safe. He's 1 month postop and we must get to 6 weeks without a fall or risk messing up the surgical repair. What's next after that, a hip? How have others coped? I'm so tired of repeating myself and he doesn't understand what I say anyway. Maybe I should just keep quiet. He also gets up during the night. I don't know what I'm going to do.

By annwood On 2009.12.13 21:48
This is a very difficult problem. You will have to eventually get to the point where you say I have done all I can do and resign yourself to the fact that he will fall. I had to have someone with my husband AT ALL TIMES. That means if you got up to go to the bathroom he would manage to fall before you got back. There really is no way to keep him entirely safe. Make sure there are no pointed corners or other objects that will be a problem if he falls. You can purchase rubber corner guards at a medical supply store but I found that baby depts carried most of what I needed at a much reduced price. This goes for rubber sheet pads and door guards. You actually have to "baby proof" your house. I also got to the point qwhere it was sometimes necessary to tie my husband down in his chair. They no longer sell restraint belts but a medical supply store will have the same thing only it is now called a lift or gait belt. There is a pad with an alarm that goes off when a patient attempts to get out of bed. It fits under the sheet and works very well.

I completely understand your frustration over repeating yourself. I found it easier to say short sentances ONCE and then go on. Your are correct that he probably is unable to fully understand what you are saying and if he does he most likely will forget it in 5 minutes. Keep things simple for you and for him.

I know you are exhausted, frustrated and frightened. All of us are here for you.

By lynn On 2009.12.14 09:01
I want to be at the point where I say I've done all I can do. For now, I have only anxiety. this has been going on since September. How much longer does this last? Where is his energy coming from? As soon as you step away, he's up and on the ground.

By Mary On 2009.12.14 11:38
lynn, this was so hard for me to understand with my Dad. He seemed "with it" enough to understand that if he tried to get up on his own, he would fall. But the moment he thought he was alone, he would try to get up on his own! I'd have talk after talk with him and he said he understood and I thought he did understand soon as he thought he was alone, he'd try to get up. I was never sure if he didn't understand his limitations or if he was in denial. When he went to the Veterans Home, they put an alarm on him but I was told by the nurse that the alarm didn't always prevent falls. They go running when they hear it but sometimes they cannot get there quick enough. I don't have an answer for you but know I feel your pain. Hugs and blessings, Mary

By annwood On 2009.12.14 22:46
Lynn, you don't give us much info about your husband - how long has he had PD, does he have dementia, what meds is he on??? There is no way to tell how long this will last but it is generally the last phase of this terrible disease. My husband lived about 6 months with his dementia at this level. I also remember thinking how long will this last. I was afraid that it might be years and I knew I could not live in that state for long. When he died I was relieved - for him and for me. He did not deserve to be in this undignified state. Unless you have or are going through it you can't imagine just how dreadful it is.

It took some time for me to figure out that no matter what I did it would not get through to him. I even made signs that said "Walk = Fall". It didn't work. You wonder where those bursts of energy come from. They can be so weak that they can't move and then bang they are on the move and falling the minute you turn your back. Nights are generally worse. Much like the sundowning you see in dementa. There were days when my husband would fall 3 or 4 times no matter what I did. Once I had family here for dinner (8 of us around the table) and before anyone could get to him my husband was up with his plate of food, heading to the kitchen and he fell. I think they finally appreciated what we were dealing with. Once his Occupational Therapist volunteered to stay with him for 2 hrs so that I could get away. Up until then I think she thought I was making up things because he was very good at acting normal for short periods of time. When I arrived home she was waiting at the door and couldn't wait to get away. He had fallen twice and urinated in the livingroom corner under her care. She said to me "I don't know how you do it". By the way she never volunteered to help again!

You need to come to the point where you realize he will fall, he will not be able to understand what you are asking him to do. I would ask my husband what he was thinking when he got up and he would say that he just didn't know. Accept this for what it is and know that there is absolutely nothing you can do to correct it. Don't make yourself crazy. We are here for you - this is tough.

By LOHENGR1N On 2009.12.14 23:41
lynn, also you mention He is one month post-op? Did He have any anesthesia? Was He "knocked out" during the operation? This can be the cause of a myriad of problems from the memory to the fidgeting to the not understanding. We can make suggestions as to what's going on but as Ann said the more info, the more We can try to narrow it down and find some answers for You if the answers are out there. We're all here for you. Take care, best of luck and hang in there.

By lynn On 2009.12.15 21:29
My husband is in his 16 year of rigid-akinetic form of PD. His decline has been fast since July. No other medical reasons have been identified. He is on most of the typical meds, sinemet,comtan.mirapex. Seraquel was added after he went to assisted living in October. The dementia was there for about 1 years but not apparent to others beside me.I now know that i compensated for his loss. Since July, his dementia has become very obvious. His falls use to occur when he turned or carried something. His falls became very frequent in August and would happen for no apparent reason. At about the same time, I noted he had no impulse control, would say he understood and then do the exact opposite. That's the history. Last, he has serious swallowing problems and coughs a great deal. He's on pureed foods and thickened liquids. I feel pneumonia is close.

By LOHENGR1N On 2009.12.16 00:18
Thanks for the background lynn, however you failed to mention when He had his surgery was he anesthetized? As this can cause seemingly rapid or obvious signs of dementia/delirium as a rule dementia is not fast onset. However with Parkinson's we all know there are no rules! Also You mention dementia was present for about a year but not apparent to others beside yourself. Was a diagnosis of dementia just recently made? After the surgery? Just trying to ferret things out here looking for reasons behind rapid decline. If I'm prying or being too nosey just tell me as I'm really not trying to be.

At times I may seem to be nosey, as a patient I try to be aware of troubles with others and any early warning signs. Not to be neurotic or phobic, just to be aware and to find answers if any. This way in the future I can if something is not quite right, instead of working myself into a full blown panic attack I can think, ok, I've heard of this before and it might be caused by..........instead of rushing to the worse case scenario. Take care, best of luck and hang in there.

By lynn On 2009.12.16 18:55
My husband's surgery was 5 weeks ago and his dementia was diagnosed back in August. The way he is acting now is identical to how he acted before the surgery. He won't sit still, gets agitated and mad, and attempts to get up and falls. I would like to know how long this lasted for other caregivers?

By annwood On 2009.12.16 21:44
If he was acting this way before surgery the behavior is probably not related to the anesthesia. As you have read here, dementia is a component of PD in 40 to 60% of the cases.

You mention swallowing problems deduced that pneumonia is a real possibility. You are correct. This is also a sign of far advanced disease and results in weight loss and infections.

As to a time frame - there is really no way to know. My husband also had signs of dementia for about 3 years and I think that I was the only one who noticed it. It became full blown with erractic behavior, compulsions, falls, hallucinations about 6 months before he died. I had Hospice involved for the past 3 months and he was at home. It is my belief that he died of pneumonia.

By lynn On 2009.12.17 12:22
Annwood- As always thanks for your input. He sees the neurologist in Jan and I will ask for a hospice assessment. Did you ever treat your husband for pneumonia? Considering where we are now and the fact that an acute care hospital will bring up the feeding tube issue again, I'm getting prepared for whether or not to treat pneumonia when it happens. I feel it's only a matter of time with his swallowing difficulties.

By annwood On 2009.12.17 15:06
No we did not treat the pneumonia. Like you I did not want to revisit the feeding tube issue. He was under Hospice care and they agreed with my decision. It is very rough and there is no way to feel good about it. There comes a time when an individual's dignity has to be considered and my husband had made his wishes known before he developed PD. I think of you often throughout the day and remember that I was going through the same thing two years ago at Christmas. Stay strong.

By Mary On 2009.12.17 16:16
Lynn, my heart breaks for you as I have recently walked in your shoes. I cry for us both. I agree that pneumonia should not be treated, nor should a feeding tube be addressed. I do not understand why doctors do not encourage as such instead of making us feel guiltier than we already do. I feel that treating our loved one with such things only prolongs their pain and poor quality of life - it doesn't fix or cure anything. I put Dad through more medical tests and procedures than I should have trusting his doctors. I would be a much better caregiver now.....hindsight is truly 20/20. Hugs, blessings and prayers, Mary

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