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Topic Falling and then to ER Go to previous topic Go to next topic Go to higher level

By sunshine On 2011.10.17 01:40
I'm feeling pretty scared at the moment. My hubby went out this morning and had a fall, fortunately on grass, but nonetheless he fell literally flat on his face. He had walked to a favourite spot down the road where he can meet up with some buddies and chat, however, upon his leaving, I checked that he took his pills, "yes" he said he had and he assured me that he was going to go with his walker, not his cane. So when he left I was feeling good for him that he was going out and good for me too cause I could have an hour or so to myself to shower and get dressed for the day. A little while later the phone rang, it was my hubby, and he was at the emergency at the hospital on a stretcher in the hall. He'd fallen and they took him by ambulance. I went to the hospital and he was not looking too good and awaiting a doctor to see him. Upon talking with my husband I found out that he in fact did not take his medication and he walked all the way with no cane, no walker, nothing for support. His vitals were all over the place, he was really really weak. When it came time to give him next dose of meds, they gave us permission for him to take them and after a little while he started to stabilize again. They had done all the blood tests and monitored his vitals and after observing him for some time they sent him home. I am so scared of all of this. It freaks me right out. I don't know what to do with this man. We've had all kinds of tests done on him to find out if there is any cognitive impairment and it is very minimal, he has a watch that vibrates on his arm when he needs to take his pills and if he has something that he has to be totally up to snuff for he remembers his pills on time perfectly. I'm rambling here but I am so confused and feeling guilty for not checking up on him. I wasn't barely out of bed before he decided "I'm going out." I could have driven him if he had wanted to wait for a bit for me to get dressed. Anyways I guess I'm confused. He passes all the tests he's had done with special people in the different fields and I just get a sense of being able to not be on pins and needles and boom, he pulls something like this. It is a pattern for him and I am at my wits end. There are many things that he will do and it always points to me not taking good care of him. I just want to cry right now because I just feel so stressed and I feel sad too and I feel like a very bad bad caregiver for him. We had counselling for our relationship as well. Our communication was really great while we were attending the appointments then as soon as they were over he stopped talking to me again. Hence our intimacy level plummeted again. I actually felt like we were making headway. Hope, hope, hope, and confusion, confusion, confusion, and guilt guilt are my regular companions. I'm sorry, I don't mean to be whining but I am really scared again with this most recent episode. It just seems like he just doesn't want to be up to snuff with me anymore and he can perform absolutely great for everyone else. I don't know what to do. It is scarey because I'm really afraid that this is getting worse rather than better and I'm afraid that he is going to get really badly hurt. And it will be all my fault for not being on my toes with him. Is this all part of the Parkinsons personality? I just don't know what to do anymore. Has anyone else experienced anything like this with Parkinsons and is there anything you could suggest to help me cope. I feel like a balloon running out of air right now. I just pulled myself out of the pits earlier this year and I feel like we're heading down that slippery slope again and I feel like it is all my fault because I am the caregiver and I must get this figured out.
I pray for a miracle, that I will receive answers soon from God, and sometimes when the answers do come, as they always do, things go along okay for awhile. Then booooooom!!! I'm just venting and reaching out to you all for some guidance. I honestly don't know what I can do with him. We love each other so much but this disease feels like it is working heavily against us right now.

By dear On 2011.10.17 04:27 [Edit]
My husband engages in similar behaviors, which I experience as a lapse in judgement. I think some of it is wishfull thinking; wanting to be with the guys and seem/be normal. He quit examining his behavior in terms of pleasure vs risk, and says he does what he feels like doing moment by moment. He is easily distracted so gets drawn into things easily. and remembering whether he took his meds isn't always accurate, and he has a watch that beeps, too. The problem with this is that if he is engaged in smomething else when his watch goes off that he doesn't want to interrupt, he then forgets to take the meds until his symptoms indicate he hasn't taken them. By this time, this can mean a fall, choking more on his food, inability to get out of a chair, or unintelligible speech. I don't think it is possible to always avoid the consequences and for my own good, I am trying to let go a little bit and accept that some of this is par for the course. We can't protect them from everything, though we might try. It is heart breaking but no reflection on the quality of care. The fluctuations in my husband's abilities are confusing to me, too.Though I understand this is normal when brain damage is the cause, and deficits are demonstrated when problem-solving falls apart. Living with the responsibility of the consequences for a loved one's well-being 24-7 when we can't anticipate where their reasoning or decisions become fragmented is a heavy reality. My heart goes out to you and your husband is blessed by your loving care.

By sunshine On 2011.10.17 09:53
Thank you Dear for your reply. I opened my computer as soon as I awoke this morning hoping to find a response and there you were. It really helped to read your response and to know that this is something with the Parkinsons disease. It is very complex indeed but helps so much to know that you have experienced the same feelings and the same scenarios. I found your response most helpful and reassuring in how you have a good perspective on it as well. Knowing that you share similar feelings and the same puzzlement helps too. Sometimes it feels very isolating and lonely on this journey with my husband. People outside just don't get it and they are very quick to judge as they see my spouse, most often, and his illness first, then they are very quick to pass their judgement along to the caregiver(me) because it appears to others that I'm not doing a very good job. For some reason my hubby has enjoyed this attention and embellishes upon it as well. I find myself hiding most of the time to avoid the looks, the words, or conversations of concern based on something he has done or said to emit the attention and the victim mode which is very disempowering for him. It is so sad to know he does this and he doesn't really get how much drama he creates around us that is so negative based. Do you experience this too?

By susger8 On 2011.10.17 14:37
The course of PD is full of ups and downs -- it's so variable, you never know what is around the corner. Your husband's physical and mental condition is liable to change from day to day. Even from hour to hour.

Falls are part of the picture. Sadly, you will not be able to prevent all falls. We all do our best, but we can't glue ourselves to the sides of our PD loved ones.


By LOHENGR1N On 2011.10.17 16:02
I think that many times it is perception and not the disease that causes so much distress in People dealing with Parkinson's Disease. First the general public knows next to nothing about this disease and secondly the organizations and associations lack in giving solid information on the effects of daily living concerning Parkinson's. This leaves the patient and caregiver/partner floundering without direction.

Parkinson's Disease, as of now doesn't get better, it is progressive, it gets worse and does so on it's own time. We're a society that expects results. We expect to know what is happening or going to happen in injury or illness. A broken bone and it should mend in 6 or so weeks maybe 8. Expect a cast of some sort during that time, itchiness while healing etc.. Flu get bed rest and fluids. Parkinson's? Expect everything to get bonkers! Stages to go by? No good, progression seems different for each. Medicine can help one to seemingly go back a stage only to the next day, hour or minute rocket ahead to another stage. Or One can do nothing and all of a sudden feel great only to crash and feel worse than ever. All the stage scale can do it tell what might happen down the line but not what will happen for certain at any given time. So We're stuck, patient and caregiver alike. We're also stuck with the knowledge that Our friends will question why We or our loved one's aren't getting better. Stuck with the knowledge that one might not fit the criteria for operations or gene studies in the news, breakthroughs in fighting Parkinson's Disease. Their perception is it's for everyone with PD. So we're stuck trying to provide the safest environment possible to live the fullest life One can. With the ups and downs, setbacks and struggles of living with Parkinson's We tend to set undue goals and expectations upon ourselves.

We become too hard on each other. A way to view this that might help is for right now this next few minutes Lets not think about Parkinson's Disease........Let's substitute growing older in it's place. It's morning, we get up and take our vitamins, skip caffeine go right to juice and a hearty healthy breakfast. We take a brisk walk before starting the rest of the day......but....our walk is interrupted by a limp.....our ankle hurts. Of course it hurts, over the years we've put a lot of wear and tear on it and we're getting older. Wait a minute...we ate good and took our vitamins didn't that count and stop aging for a time? I'm eating healthy and exercising doesn't that stop the aging process? Doesn't it slow it? No! It might build up stamina and strength to help bear the aging process for a little more time in the end but we're still growing older.

Now a couple of questions;
How many People reading this really expect to or think they can stop time and aging? NO ONE does! It is completely irrational to even suggest you can.

How many think they can, are trying to or are acting like they can stop Parkinson's Disease or reverse it's progression? I'll let you answer that to yourself sitting there.

As of right now, present technology We can't. Remember each case seems to get different symptoms and progression of this disease. Yet We knock ourselves out trying and expecting to do just that. We beat ourselves up because we can't do the impossible! We create situations of failure, We feel inadequate because of this and when it seems like friends question our success or motives we feel like We're lacking in ability instead of meeting these feelings head on we try to bury them inside Us until they overwhelm Us. All We can do is to the best of our ability keep loved one's safer and more cared for period. I know it's hard to admit but We owe it to ourselves and our loved ones to acknowledge this.

As for what others think? If they opinionate ask them to come over for a few hours or a day to help to see what it's like? To put their mouth in neutral and try walking the walk. If they can handle it you may have some help to ease your burden. If they can't and are honest you might have a defender to answer I couldn't do it and if you haven't tried keep quite. Really you'd have nothing to lose if they wouldn't try what help are they anyway.

This isn't a I have the answers posting. It isn't a here's what you should do posting either. It is a different way to look at our problem and a post to say be kind to yourself and your loved ones. It's a tough unfair world out there just try to love each other and live every minute of the time you can. Take care, best of luck and hang in there.

By dear On 2011.10.18 01:00 [Edit]
Yes, I do experience it and at times find it intolerable and I, too, worry about what others are thinking about how I am handling this. Ditto on the drama and I have no answers, either.

I am connecting with the local support group and enjoyed the recent luncheon, feeling a connection to these incredible women. I am trying to learn more about this disease process, and what I can and can't reasonably do. I am trying to readjust my perspective and expectations.

The effects of Parkinson's damages the brain. With brain injury there are personality changes, and the fluctuations are difficult to adjust to because we have learned to see our mate one way and now they present in a very different manner. These disconsonant, discordant, incongruent experiences 24/7 are very challenging and can be exhausting. The confusion and stress trigger in us a level of heightened attention, and requires a high level of decoding of what is being said, and sometimes, changing behaviors as well. Living with brain injury is very stressful for families and caregivers, according to well documented peer reviewed and published studies. In the TBI arena, a lot of support is now provided to families and caregivers because they now know from the research what the impact is to the individual members, and eventually the outcome for the "patient". Caregivers are cautioned to understand how stressful the journey is.

This doesn't take away from the love we have for our mates; nor our desire to respect and honor our mates through diminished capacities at times; nor does it claim understanding of what it is like to be in their shoes in having Parkinson's. It must be a very confusing maze for them to experience this. Given the limited amount of information on Parkinson's, information already forged for families dealing with Alzheimers and TBI I find useful.

All we can do is our best, and take care of ourselves as well as our mates. We must forgive ourselves and others for what we feel should or could have been better. Forgive our mates so as to avoid the frustration and anger. Praying is an important outlet for me. You are not alone and I am pleased to have met you on the forum.

By sunshine On 2011.10.18 16:36
Thank you so much for responding and being so clear and honest with me. I sincerely appreciate all of your support. It is very confusing and changes from day to day but it has also been reassuring for me to hear that each of you understands and to know now that it is a part of the disease process too. Today my hubby is puttering around doing all his little things as per normal, all calmed down and seemingly back to himself. We shall enjoy this time and I shall remember your kind caring words that it does fluctuate and I am not alone and will know in my heart that it isn't the end of the world so to speak. I have a feeling, hopelessness and fear will subside a little more quickly because if I cannot seem to be accepting of the hills and valleys I will be able to re read this post that all of you so kindly responded to me. Thank you very much. :) :) from both of us even though my hubby doesn't like to read the forum he is happy that I have a place to go for me. :) Thank you kindly.

By housemouse On 2011.10.24 21:59
Sunshine, I can so totally relate to your feelings of frustration, panic, and fear.

I just went through a similar experience with my husband, who has been told by all of his docs and therapists to always use his walker, and not to carry something and try to walk at the same time.
He left a hospital, took a 90 minute shuttle bus and then a cab, carrying his luggage, with no cane, no walker.

And couldn't understand why I was freaked out.

He is always on his best behavior for our adult children and others, but when alone with me, he feels comfortable, and collapses into silence and depression. As a result, the adult children see him as far more competent than he really is, and think I am over-reacting or making things up.

Then they try to lecture me as to how I could better "manage"! This adds to my frustration, loneliness, and anger at them.

I am now going to get counseling, not just so I will be better able to handle the stress of taking care of my husband, but so I can deal with my adult children, who want to be helpful, I am sure, but who often make me feel terrible.

By parkinit On 2011.10.30 18:36
Sunshine. We can so relate to you. We've been through, are going through, or will go through what you are now facing. After suffering repeated falls, and me feeling horrible, I decided that I could put my spouse in a cocoon, not wanting him to move lest he fall, or I could let him live and let him fall (I cannot always be where he wants to go when he wants to go there). He understands the danger as well. When he works in the back yard, he puts on a helmet now. He wears an alert device so if he falls when I'm not around, but nearby, he can call me. I've learned to brace myself when he calls me and prepare for the worse - which I have had to face many times.

In my humble, unprofessional opinion, I made this obersation to a friend of his who visits once a week: When he feels good, he is at his most dangerous as he seems to feel invincible. He replied, "You know, I think you are on to something."

I think this is the case: With PDers, when they feel good,they are are feeling good emotionally - possibly too good, with feelings of euphoria and invincibility. This causes them to make unsafe, unsound decisions.

I am resigned that I will spend a lot of time in the ER, but he will not be kept confined to the house to protect him. I want to let him live to his fullest capacity.

By LOHENGR1N On 2011.10.30 19:52
My friend you have hit the nail on the head with your observation. We are most dangerous to ourselves when We feel good! It seems to happen so rarely as the disease progresses that when We feel good we go at a project with gusto because we know/sense we have a limited time to do it. Case in point? The resident know most of it all here on the forum, Me. We had a Nor' Easter coming in Saturday. Friday afternoon between doses of med's I was feeling pretty good and noticed a chore I'd been putting off till just such an occasion (feeling better). So, mister smarty pants Al got out his ladder and up on the roof he went. Sometimes reality hurts, sometimes it hurts more! This time it just hurt luckily. To make a long story short and to spare embarrassment I was standing on the roof then I wasn't! I was laying flat on my back on the roof! The lucky was I didn't fall to the ground off the roof! Just laying there no tools in my hands, no hat on my head everything jarred off or away. After slowly moving various parts of my body to make sure they worked still I got up and came down off the roof. Now to a normal person that would be enough but to a feeling pretty good Parkey well....I noticed the rain gutters were full of leaves, so....up the ladder again almost fell off the ladder ..... twice....(Parkinson's smirk) that was enough for me for that day! My plan now is Monday morning when the Woman who helps me comes to work I'm going to the hardware store buying a couple feet of chain and a padlock, locking up my ladder and giving her both keys so if the mood hits again when I'm alone I can't follow through and get the ladder out. That's the plan anyway.

By Reflection On 2011.10.30 22:19
Al - so glad you weren't seriously hurt.
And bless you for sharing your story with us.
You have a wonderful perspective on Parkinson's, and on life.

By parkinit On 2011.11.02 19:41
Al -

Your story is so funny because I was "indisposed" in the house as I heard the ladder being moved around in the garage just today. I thought, "Oh, no!" When able to, I went outside and sure enough the ladder was propped up against the roof. Luckily, my spouse's friend showed up about that time and dissuaded him from doing anything "foolish."

Must be the season . . .

By LOHENGR1N On 2011.11.03 00:00
parkinit, I'll buy must be the season. Yup I'll blame it on the season...whew....I knew it was any of my fault ;)

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