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Old 02-14-2010, 02:19 PM   #1
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Too much to handle

Hi all Been crafting an e-mail in my head to you all for awhile now. Don't know ***why*** I ever leave this board............don't mean to..........I just get so overwhelmed sometimes This past month has really been something. Actually ended up with BOTH parents in the ER the middle of January. For two different reasons, but having both of them there at the same time was extremely stressful. I'm still dealing with the stress of that day, and then my DSD took a bad fall at 3:00 AM the other night which landed him back in the ER as he hit his head hard and split the back of his head open

There's so much going on as my DSD continues to decline. He now has lost vision in his left eye due, most probably to his diabetes. The loss of vision has been diagnosed as "Retinal Vein Occlusion." Boy was that a long day of getting him loaded in the car (he's very weak now), driving across town in heavy traffic and super heavy rain, waiting for nealy an HOUR because the doc was backed up, and then having to help my DSD through the appointment as he wasn't even able to steady his head and keep his chin extended and up like you have to when having your eyes examined / or worked on. Yea - so that appt was the first week in January - and only a week later was the day in the ER - and on and on it goes.

As for the ER visit, turns out my mom had an inner ear infection that hit her out of nowhere, made her sicker than I've ever seen her. She was so dizzy that even with my help she was too dizzy to get up off the couch and go pottie At that point I told her I needed to call 911 and she started yelling at me As we were waiting for the ambulance to arrive for her, she was telling me that my DSD had fallen several times the night before.

So - after they got her stabilized in the ER, I pulled the ER doc aside and told him about my DSD and the falls he had taken during the night. You should have seen the look on this ER doc's face!?! You would have thought I was the worst daughter in the world for NOT having called 911 for him Can all of this stuff get any harder???? So - I also have a very interesting dynamic with one of my sisters (too long to go into here), but suffice it to say, she has her own set of problems, and so, not only did I have to break it to my DSD that I needed to have him taken by ambulance to the ER (he was too weak for us to transport him), but I had to run the gauntlet of my bi-polar sister as she was staying with my DSD while I was at the ER with our mother.

Once they got my DSD examined, the ER doc was very concerned about his weakness but left it up to our family as to whether or not to admit him to the hospital and begin the placement process into a nursing home, or could we step up his care in assisted living, etc and keep him safe that way?

At this point, I had been in the ER over 10 hours, and I was falling apart. By this point in time my other sister had driven up from Portland and was there for moral support (thank God for her). After breaking down completely and sobbing uncontrollably (so bad that one of the nurses came up to me and my sister and offered us a private room and a box of kleenex), my rational sister and I decided that, although the 100 days of Medicare would be helpful financially to our folks, the required 3 day hospitalization would be too hard on our DSD and that we wanted to take him back to assisted living, see if we couldn't beef up the care there, and see how it went.

Well, we definitely made the right decision! My DSD most probably had another mini stroke, thus bringing on the increased weakness and falls (this was confirmed by his regular doc later that week). The assisted living facility where my parents have lived since October is so great. They wanted to help us any way they could. We beefed up safety checks, toileting (my DSD is incontinent - he has Frontal Temporal Lobe Dementia), etc and my DSD seemed to improve. The assisted living staff reminded us of what they're capable of doing (my bi-polar sis and mom thought that if either my mom or DSD got too sick, that they were required to move out), and that basically they're capable of doing everything, are welcoming to hospice, the only thing they can't do is strictly "skilled nursing" which ends up being IVs. As long as my DSD doesn't need an IV, we're good. He can live out his life there. That is my prayer. No hospitals - no locked dementia wards. Please God, no. I know what you all are going to say - and I realize it too - that if it comes to that - it will come to that. But let me have my bit of fantasy for the time being

And, DGab's words are coming back to haunt me. When I first came on this board last summer / fall, she warned me that my mom might go down the same path - the dementia path. Well - guess what? During her ER stay they did an MRI. Upon further review of the MRI her regular doc requested a neuropsych / neuro workup. That all begins tomorrow. And - I am sick Have been sick for nearly a week and do not feel up to the tasks of this next week. The neuropsych appt on Monday - then various other appts for my DSD. I'm going to need some sister help, there's no doubt. I can't keep doing the bulk of all of this..............{{{{sigh}}}}.......... ............I wondered what it would feel like to write all of this out. It feels good. It helps me see how much has been going on and helps me understand why my anxiety has been triggered and I got sick. This is a ton to deal with.

I've been really strong - up until now. I was stromg throughout my own cancer ordeal, then the year of doc appts of my DSD to get to a diagnosis................I just don't know if I have it in me to now go down this neuro road with my mother. My mother who I have a very strained relationship with. Anyway - thanks for listening. I really do appreciate it. I really need to stay on the board. I do-I-do-I-DO!! I don't do well without all of you

 
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Old 02-14-2010, 03:32 PM   #2
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Re: Too much to handle

Hey, TC

Good to hear from you again. I was wondering about you.

It just all gets so overwhelming doesn't it? I just don't know how you've done it. I'm always amazed that no matter what I"ve been thru, someone else has been tested so much more!

But, you know what... You WILL survive. You'll just do the best you can every day. And one day, You'll forget so much of the stress and bad stuff. I promise.

Hang in there. Did you ever get the Audi service done? I just dropped another $2K on mine. But it's worth it. Just love that car. And, hey it's better than a car payment, right?

Please don't forget about us. We are here for you to vent any time. Later. K

 
Old 02-14-2010, 04:22 PM   #3
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Re: Too much to handle

Hey Ken -

Thanks for the kind words. For months now I've wondered how I've been handling all of this so well. I guess it was bound to catch up with me. The ER visits certainly haven't helped. I was supposed to be in CA this weekend at a ballroom comp. I'm glad I had the good sense to cancel my plans. Even though that's something I love, it just would have all been too much with what's going on.

I'm glad we have the Audi connection I'm with you on lovin' that car! I haven't had the recall service done yet, but I'm on record with the dealer that the car's been idling kind of rough. They don't have the parts in yet for the recall - or so they tell me. Look - you instantly cheered me up by getting me to talk about Audis vs. dementia!!

After posting to the board, I e-mailed my sisters about next week. We're going to move some appts around to alleviate some of the stress we find ourselves under. A bit of a reprieve. I know all will look better once I'm over being sick. It's not feeling much like a Valentine's Day although my fiance is due over with soup & groceries after the Daytona 500 ends! LOL! We all have our priorities! It's fine - I told him not to feel any pressure about it being Valentine's Day. I'm certainly not up for making much of a fuss. I requested my favorite chicken noodle soup from a nearby restaurant, so that will suit me fine.

Okay Ken - tell me more Audi stories! It's a good diversion!

 
Old 02-14-2010, 04:28 PM   #4
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Re: Too much to handle

Bless you TC!! My heart goes out to you and I do know how you feel. I think mom's diagnosis was one of the worst moments.... to know I had two instead of one to deal with. Yes you have been so very strong and held it together to this point. Guess what.... as overwhelming as it seems to be right now you will continue to be strong and you will continue to hold it together. You, like me, would really like to run away but we don't.

I HATE ERs!!!! I have spent enough time in them in the last few months that I am recognized when I walk in. They take so very long do so so very little. It takes so very much out of you that you truly don't believe you can go another step... but then you do. Tomorrow is a new day. What you have to do is be sure you are taking care of yourself as well as your parents. Eat right, get some exercise, and get your sleep. You can't do this exhausted.

And please call your sister and explain to her that you truly need her help for a while to get through this period of diagnosis with your mom. Don't be hesitant to ask for help, especially if she is willing. If you don't ask she won't know..

As for the assisted living... yes there are some that can handle dementia patients to the end. Mom and Dad are in such a facility. I did chose to put mom and Dad in the locked unit because that is what they truly needed. The locked unit is smaller, with more one on one care, and neither of them can "escape". Dad's delusions drive him to act out whatever he envisions. He was found walking down a busy street at 6 am with it 13 degrees outside. He was on his way to the courthouse to meet me... we don't know for what! Mom had to go home... and she would run out repeatedly in an effort to find a way home. They both truly needed the security of a locked facility. Now Hospice is involved with Dad in the unit. They will remain there from now on. It is not the horror place that might be imagined. Yes, they all have dementia and many have behavioral problem... but I have found the most wonderful staff, family members, and dear sweet residents. Mom has finally, after 2 years, made friends and Dad has a sense of security that allows him not to follow Mom everywhere. Each has to find their own answers for their loved ones. It appears you have found the one that works for you and I have found the one that works for me. We both just have to hold on. As Ken said earlier today... it doesn't last forever

So just hang around and know we have the other end of your towels. Vent and relieve yourself of all that is bottled up in you. We truly do understand and we are here for you I am so glad you are back TC!!!

Love, deb

 
Old 02-14-2010, 04:50 PM   #5
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Re: Too much to handle

Thanks Deb. Just reading your words that getting the diagnosis for your mom was the hardest moment.............I know I am not alone. Thank you. And please know if my folks turn out to need a locked ward, I will go down that road. The hesitation you read / feel is from my DSD's 3 months in the locked ward this summer when it wasn't exactly where he needed to be, but the best **fit** due to his needs (his incontinence and lack of impluse control). Because he wasn't really suited to being there it was very hard on him and very hard on all of us.

I know it's where your folks need to be and you are an awesome daughter to see so completely to their needs. If either of my folks begin to wander - or require IVs, we will have to move them. And, of course, there's the financial aspect too as they are currently in a private pay facility. But that's another story for another day. It will be interesting to see how my feelings ebb and flow as we go forward, but I can tell you that we have suspected that something's been up for years actually with my mom. To hear that they saw something on the MRI and want to do a neuro workup - just made it all the more real I guess. And - I have to thank you for giving me a heads up when I first came on the boards. This would have hit even harder without your caring heads up Sorry that your dad is in hospice now. I hope you are doing okay too!

 
Old 02-14-2010, 05:59 PM   #6
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Re: Too much to handle

You've been carrying this heavy load around all these weeks and not telling us? Leaving you all alone to handle it all? And I always think when we don't hear from someone everything must be going well!

Happy to have you back.

Remember that not all assisted living places and not all nursing homes are the same. The care overlaps - some ASL's do more than some NH's. So you may very well be right that both of your parents can stay right where they are for the remainder of their lives. Why not? As soon as you have a DNR signed, IVs are not necessary.

I hope you stay out of ERs for a long long time now. Don't even think that a doctor looked at you as if you were a bad daughter. How exactly would that look? A look of fatigue, resignation, overhwhelming sadness, being harrassed, being overworked? He may have been on duty 24 hours and dealt with a few deaths. It probably had nothing whatsoever to do with what kind of daughter you are.(A fantastic one!) The nurse was nice to hand you Kleenex. I would have preferred knockout drops ....

Hang in there. The secret is "one day at a time"

Shrea, shrea (pronounced shray shray) my friend from the Middle East used to say, roughly translated as 'one day at a time', or 'one step at a time." Shrea shrea -- I used it all the time as I cared for my Mom. First this, then I'll worry about that!

Love,

Martha

 
Old 02-14-2010, 07:26 PM   #7
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Re: Too much to handle

Like everyone else, I say welcome back. I don't think I can maneuver this on my own with one parent involved much less two!

With all you are going through can you even begin to imagine how hard it would be for someone doing it at home on their own?! Good heavens. Thank goodness for AL and Nursing homes. At least it gives us some respite.
I haven't had the experience YET dealing with ER's. Between the stories from Deb and now yours I am not looking forward to it that is for sure!

And Martha is right. Don't borrow trouble by worrying ahead of schedule. Take it one day at a time. But that doesn't mean not laying out a good plan of attack. And Deb too is right..get the other sister on board for as much as she possibly can.

Martha, you made me laugh about the knock out drops. My drug of choice is an Advil PM nightly.

Love, Meg

 
Old 02-14-2010, 09:02 PM   #8
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Re: Too much to handle

"Shrea, shrea (pronounced shray shray) my friend from the Middle East used to say, roughly translated as 'one day at a time', or 'one step at a time." Shrea shrea -- I used it all the time as I cared for my Mom. First this, then I'll worry about that!"

Thanks Martha. Thank you so much. Shrea, shrea. I am memorizing this. And thanks too for the feedback about the ER doc. As my friend who lives the 12 step program always reminds me "take the next indicated step." It's just funny (not ha ha funny in this case) how it all can just seem to back up on me. How I can go along and handle it, handle it, and then...........one more thing, like an ER visit, and I'm overwhelmed.

And yes Meg, I hear ya about the blessings that assisted living and nursing homes can be! Even with my folks there, much of my time is given to them and their lives right now. But, I do remind myself (and my rational sister reminds me too) that they are in a good, safe place. I'm very thankful for that and for all of the staff where they live. Heck - the marketing director there is my new best friend! We've grown quite close since my folks moved in.

I just want to thank you all for your kindness and support. It was difficult to make myself sit down and post all that has happened in this past month or so, but I'm glad I did!! My fiance came over with a movie, chocolates, and a heart shaped pizza! Awwww! Since I'm down sick, I told him not to worry about doing any kind of Valentine's, but he did anyway. What a guy. I'm grateful for him too. I will lay my head down with more peace tonight from reaching out to all of you and feeling your support. Wherever this Valentine's eve finds you, may you know that you are loved - whether you are spending it alone or with a loved one (and I've spent many alone).

 
Old 02-14-2010, 10:12 PM   #9
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Re: Too much to handle

I'm doing good TC... as good as I can be. You are not alone in your feelings about your Mom. That was the one time I wanted to just look up and ask... WHY!!! Is one not enough? Do I have to have TWO!!! Give me a break please I also suspected but refused to accept that it could possibly be until, as with you, I didn't have a choice. Then you just suck it up and go forward.

Martha is right TC... facilities are not created equally. The facility mom and Dad were in and the one they are in now are both run by the same corporation. The difference between the two is night and day. I have been in nursing homes that don't have as much one on one care as mom and Dad's locked unit. That is why I say investigate long and hard before making the decision.

One of the reasons I went ahead and called Hospice is before of ER visits. With Dad's tendency to delusions and agitation, ERs are a nightmare. He already had DNR orders. They would just put him through test and send him back to the facility. With Hospice he will probably not have to go back to the ER. If there is a problem then the Hospice nurse or doctor will come to the facility to check him out. If lab work needs to be done it will be done in the facility. Mobile x-ray comes to the facility. The DNR specifies no IV so that is not an issue. January 28 was hopefully my last trip to the ER with Dad.

Yep, that is how stress does. We keep moving forward as it piles up behind us. We think we are ahead of it until it starts to avalanche over us and there's not much we can do to stop it at that point. That is why it is so important to take care of ourselves including our emotional well being. Don't just hang on. Just making it is not enough. We need to be sure we are mentally and emotionally in control. Don't let the situation drive you. Schedule time off for yourself. Occasionally something will come up that preempts your plans but you might be surprised how many times you can go through with them. It is excellent that you changed some appointments. That is the kind of thing you need to do.

So you are doing things right and well. You just need to "me time". As Martha says... Shrea Shrea!! (I love it!) Thanks Martha No worries about what might be with Mom... it is what it is and you will deal with whatever you are given!!!

Love, deb

 
Old 02-15-2010, 05:06 AM   #10
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Re: Too much to handle

I think being able to come here on a daily basis and vent just a little must have saved me. Instead of the long build up then breakdown. And it's a great place to find a little of the humor and distraction that we all need.

Have a great day, and

Shrea, Shrea! Y'all.

K

 
Old 02-15-2010, 07:59 PM   #11
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Re: Too much to handle

Hi all - so today got turned on its ear My sister had driven over 3 hours from Portland to take my mom to her neuropsych appt only to have my mom tell her when she got there that my DSD was not doing well today and she didn't want to leave him.

We had respite care set up to come in and be with my DSD because he really can't be left alone and the assisted living isn't setup to have someone be with him constantly. I felt good that we had coverage today but I guess it wasn't enough. My sister (who is very grounded - not the bi-polar one) called me and said that DSD really didn't look good and was complaining of pressure around his left eye (the one he is having all the trouble with) and a headache. This from a man who doesn't complain of pain.

My sister said it was the right thing to cancel, so as upset as I felt, I know I can trust her judgement. So at this point the neuro appts are cancelled. I don't know when they'll get re-scheduled. Ugh. Those appts are hard to get & I had specifically requested the neuropsych and neurologist who treated my DSD so that made the scheduling even tougher

Hey Deb - can you tell me more about hospice? The director of nursing at my folks assisted living had talked to me about how hospice works and I talked to my DSD's doc about it since it sounds like a fantastic program and one we could really use about now. My DSDs doctor looked at me like I was crazy to be asking her about hospice?? The director of nursing at assisted living explained to me that people go on and off of hospice and that she thought my DSD was a good candidate for it. We also have a DNR in place and I would LOVE to stop those ER visits. Any input would be most appreciated.

Well, I made the mistake of having a small (truly) piece of pizza last night which did not agree with my system after having been sick for nearly a week. I woke up at 4:00 AM this morning in the worst pain Feel like I've spent most of the day just trying to recover. Gheesh! My sister is back home already. She drove over 6 hours today bless her heart. Don't know what I'd so without her.

 
Old 02-15-2010, 09:52 PM   #12
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Re: Too much to handle

Hospice is set up for "end of life care". I think they have a 6 month time frame they work in but a patient can go on and off hospice depending on their medical condition. They are appropriate when aggressive medical care is no longer appropriate. Dad's medical doctor did sign the order to request Hospice.

Rather than taking Dad to doctor visits or the ER, the Hospice nurses will check on him as needed and he will be visited by the Hospice doctor if necessary. Right now the nurses are coming twice a week. If Dad stabilizes then they may cut that back to once a week... or if he gets more unstable they will increase it to whatever level he needs. Since the facility Mom and Dad are in (and most facilities) have the availability of mobile xray and lab work then all of that can be done in house as well. When I talked to the Hospice doctor he said that so many of the other test done by the ER are diagnostic for conditions that we do not intend to treat anyway and they are extremely stressful to the dementia patient. So the next fall he has, the emergency nurse will come check him out no matter what time of day it is and call the doctor if necessary. If there is a concern about a broken bone the mobile xray will be done in his bed... or a urinalysis can be done in house.

They also provide incontinent products and all medication related to his diagnosis and other some other supplies. They can provide aids to help when needed with bathing and personal care. They also have a team of trained volunteers that provide support for respite, companionship, emotional and other needs. Beyond that they have social workers assigned to each patient who not only helps the patient but the family. It is truly a team effort to support the patient and the family.

So the first step is through our DSD's primary physician. So he is the one you need to talk to. I talked to the facility nurse who faxed dad's doctor, and we received back the signed orders.

Sorry the appointment had to be canceled and hope you can get another one quickly. At least your good sister was there. I remember those 6 hour round trips when Mom and Dad were in AL. It truly makes for a LONG day

Love, deb

 
Old 02-15-2010, 10:51 PM   #13
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Re: Too much to handle

OMG I must have NO life these days. I have found several of you on this board who have been so helpful on the other one. How can we all be in this bad movie together?? To the sweet person with both parents in the ER, etc. so stressful. It is like both my parents on hospice within one week of eachother. I think how much worse can this get? I think that it is us, the ones mostly doing the hard work that are here on these boards. Why are we the ones that are so involved? Is it because our siblings have it easy because they know we will not let our parents down? I know they suffer too, but still! My sisters do NOT work. I am the one who has been on a leave of absense since December. I have to go back to work next week so who is going to take over? I know it will be me.......running 2 hr round trip in the morning, and changing my clothes for work to be at work at 3 get home at 12pm and start all over. No one can do this forever. If I eat any more fast food, I am going to have to get new clothes. Sorry, just getting more "future stressed". That is why I have one week to get this together with both parents, getting one out of skilled nursing and into a board and care, and the other........not sure yet, but maybe one sister will take her for a bit. I am going to ask her again. There is NO reason why she cannot. She does not work. She can get a sitter to help. My mom does not need much care, as she sleeps mostly and is not with dementia. And she weighs less than 100lb so it is not a heavy job to help her out of bed. She can walk with a walker. Can't wait to hear my sisters response.

 
Old 02-16-2010, 05:12 AM   #14
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Re: Too much to handle

Old, It is at this point that you call your sisters to let them know that you have pulled the weight thus far, but now you have to go back to work, and they are going to have to pitch in now. Don't ask - assign.

It never fails, that the family is more than willing to let someone else step up and handle it all. But, be prepared that when they do have to start helping, they'll make it seem like they've had to do it ALL.

My brother and his .... wife. For the last year of my mom's life, he finally had to pitch in and help take care of her. I was dealing with my wife who had dementia, my sister was going thru the grief process of a son who killed himself. The two of us had been caregivers for the past 35 years - in and out of rehabs with mom, etc.

But you would think now that my sister and I did nothing - in fact we were told that. Really? He was always more than willing to let us bear the brunt of looking after her, and really didn't like it that we had other issues at the time that we had to deal with.

It was inconvenient for him.He actually got angry at me when mom broke her hip, because I couldn't run up to the hospital twice a day to check on her - my wife was at home in mid-stage dementia at the time.

 
Old 02-16-2010, 10:36 AM   #15
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Re: Too much to handle

I'm with Ken Old.... it is time to say what you need and mean it. I have two sisters that actually had Mom and Dad for 18 months. I was there constantly helping out. Mom and Dad both got the flu and I moved in with them for 5 days. Mom fell and I was there for several days. Even arrived before she got home from the ER and it was a 3 hour drive. Dad's A-fib and delusions, it was me sleeping between him and the door. They have now been with me for 10 months, and I have seen my sisters 4 times for a few hours each time. Talk about washing their hands lol.

I do have one sister that is willing but needs direction. I had been to the facility Thursday, Friday, and Sunday. Sunday I called and ask.. "Which day next week can you go?" Not can you go but when are you going!" It works well. She is there now and I am home getting other things accomplished.

I will say that I am guilty of not being specific about the help I need most of the time. I am getting better. I also tend to just do it rather than letting somebody else do it. It's so much easier!! So you have to learn to delegate responsibility. Along with that you have to learn to be satisfied with the decisions they make. So share the load. Starting now give them task to accomplish and then let them do it.

Sometimes knowing when and how to ask for help and then allowing others to do the work is difficult

Love, deb

 
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