The Family Caregiver Forum
| Brought to you by NFCA's Founding Corporate Partner |
 |
Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.
rzxq2y
Posts: 1603
Joined: Jun 2009
|
Tuesday June 08, 2010 10:57 PM
|
|
Hi, Gabriele,
Thank you for starting a thread for me. It is so great that you joined the forum and care about everyone. But I probably will disappoint you again. Since I am a nomad in the forum, and I am not good in writing about myself. It would have been a place for me to write a self-introduction, but I have already introduced myself in many different places. However, I think that this thread would be a good place to find me in case I am missing in action.
My wife is still motivated in doing exercises with me. We do PT exercises and walking for about a couple of hours a day. That is all she can take. On the days when she can barely walk, we use my rigged up parallel bars. But every time we made some gain, there will be a setback. She is losing her mobility over time. I suppose that is the nature of fighting a losing battle. But we just have to keep on trying to lose it as slowly as possible.
My highest priority is to take care of my wifes needs and do the exercises with her, so everything else takes a back seat. But I am working on my yard and garden when I get spare time, so it is at a very slow pace. After my sister-in-laws husband cleaned the bulk of the plants that did not belong there, I continued to do some cutting little by little. But with all the recent rain, they grow back quickly. So far I have managed not to let that becoming a losing battle too. It is already June, and I have not finished planting my garden. For some of the stuff I planted, like cucumber and zucchini, there is something in the garden (probably slugs) eating them. Then I have to replant them and set up some different defense. But I will not kill, not even slugs. I need to finish soon or I will lose the season.
Our daughters visit was great. It was only over night. She was on her way from New York to Chicago to direct a summer circus camp. She flew from New York City and then picks up my car to drive to Chicago. On her retirn trip from Chicago in August, she will be coming with her husband and stay for several days. She is always daddys little girl, even though she is 30 now and married. We will see her twice this summer. In July, I am still hoping that we will be able to make the California trip to see our son and his family, my wifes sisters, as well as my brother from Taiwan. I am quite sure that we can make the drive to Virginia in September for my wifes reunion with all her sisters. So at least we have something to look forward to each month.
You see, you have an inquiring mind, but I am really a very dull person living a very simple life, not much to write about aside from care giving.
Best Regards,
Min-Shih
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Saturday June 19, 2010 10:31 PM
|
|
Hi, all my friends,
I feel so terribly wrong and stupid! My wife was trying to say something to me about the sticker. Finally all I could figure was something about the handicapped parking tag for the car. We have two cars, her mini van has a permanent handicapped license plate, and my HHR has a removable windshield tag. Yes, I know that we are planning to go to California in mid July, and we need to bring the handicapped tag with us for the rental. I did forget last time, and the time before. She has a tendency to want bits and pieces of things done way ahead of time. So I told her that I will pack it up in the luggage when the time comes. The trip is still a few weeks away, and we do not have to worry about that right now. She continued trying to say something, but I could not understand. All in my mind was that she has a habit of making whatever popping into her mind becoming the highest priority and requiring immediate attention. If she is not satified, she will not stop, Indeed she would not stop talking. I lost my patience and tried to stop the conversation. She got upset and her speech just got harder and harder to understand, so she gave up.
Oh, I felt so bad afterwards. I finally figured out what she was trying to tell me. Our daughter took a summer job in Chicago. She lives in New York City and no longer has a car. She came from New York for a short visit and took my HHR with her for the summer. I left the handicapped tag in the HHR when she took the car. We certainly do not want to find out that the tag is in the HHR which is not at home when we pack! My wife emailed her after giving up talking to me. But she told our daughter the wrong place to look for the tag, since some of the things in the HHR are different. I messaged our daughter for the erratum.
I was so stupid about not thinking that my HHR is not home when my wife was talking me about the handicapped parking tag. Then I was so wrong in losing my patience with her when I could not understand what she was trying so say. Normally I will try to ask her to say on important word in one language. If I still cannot understand, I will ask her to speak in another language, and then another. We have English, Mandarin Chinese, and Cantonese. If I still have problem understanding, I will guess and give her multiple choices and she can show me the fingers. But about the handicapped parking tag, I did not do any of this.
I apologized to her, and she did not make a big deal out if it. For once, I wish she did. So here is my confession, complaining about myself.
Best Regards,
Min-Shih
P.S. In case you do not know what the HHR is, it is a funny looking retro style little car by Chevy. It was my commuting car. I bought it because it is easy for my wife to get into and out of it. But my wife still likes to ride her mini van. She still can climb into and out of the van. If she became unable to climbing into the mini van, the HHR is ready for her.
|
|
|
|
sop832
Posts: 151
Joined: Sep 2009
|
|
Sunday June 20, 2010 11:45 AM
|
|
Dear Min-Shih,
When I was a kid, we were not allowed to call someone stupid [or tell someone to shut up, either]. ALL of us have lapses in concentration, I recently lost my mother's handicapped placard and had to get a new one. I have also left the water running in the sink, left eggs boiling on the stove, forgotten to put gas in my car, [I didn't run out, but the low fuel light came on, I've never done that before]. My theory is that we only have a certain amount of space in our brains, and something has to give, especially if it's something that we don't usually have to think about, like is the car in the driveway? It usually is, we don't have to think of it. So please give yourself some room to make mistakes. You apologized, it was accepted, so forget about it, please-don't beat yourself up. Love, Jean
-------------------------
sop832
|
|
|
|
myonly
Posts: 311
Joined: Apr 2010
|
|
Sunday June 20, 2010 8:42 PM
|
|
Dear Min-Shih,
Please don't be hard on yourself - I too have lost my temper, even this weekend, and it's supposed to be Father's Day. I haven't been very patient this week, either, in trying to get the oldest ready for his summer-long camp counselor job. I feel bad, but when I apologize to my husband, he also acts as if it's no big deal. I think sometimes our faults are a bigger deal to us than to our spouses and loved ones. Still, I feel like a crumb.
Hope you had a wonderful Father's Day. You deserve it!! You are a one-of-a-kind man.
Sincerely,
Gabriele
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Sunday June 20, 2010 10:29 PM
|
|
Hi, Jean, Gabriele,
Thanks for your kind replies. Yes, I do make plenty of mistakes, and I do lose my temper from time to time. But this is aq situation where I was wrong and lost temper on her. With her limited speech, she had to way to defend herself. I will move on and be more careful in jumping to conclusions.
I do have a good Father's Day. Our son called from California yesterday and out daughter called from Chicago today. When they were young, they used to joke with me and call me a turkey. So now when they call me on Father's Day, the say Happy Thanksgiving to me. My wife has had a good day. She went out of the house with absolutely no problem and we went to the gym. She had a good work out on her aparatus. I even had a nap. What else can I ask for?
Hi, Jean, I know that Catholic schools are very strict. My wife went to one. But it is not allowed to even call my self stupid? Ok, I did not tell my wife to shut up. I never went to a Catholic school, but I cannot utter those two words out of my mouth. I just stopped the conversation by not talking. By the way, I cannot swear words either. No one has ever told me not to, but I some words just do not exist in my mouth to come out.
Hi, Gabriele, hope that everything will go well and you will have a good time at the respite retreat.
Best Regards,
Min-Shih
|
|
|
|
Hope
Posts: 831
Joined: Aug 2008
|
|
Friday June 25, 2010 1:11 AM
|
|
Hi, Everyone!
Min-Shih, I hear how you are so angry with yourself. We all understand the frustration. You are so amazing with your wife and all you do. The frustration of not understanding a loved one is real - and it's awful. I, too, have done something similar when my husband speaks but I cannot understand. There have been a few times that I have just put my hands in the air and walked away for a few minutes. He has his voice - it's hard to make it come out, so often he just moves his lips and no sound comes out. I coax him, saying, "Say one word. Only one. Say it loudly so I can understand." He moves his lips - again no sound. I try the same thing. I do everything I can - and at some point, I either give up. I don't know how he's feeling - is he frustrated with me? Is he feeling hopeless? Helpless? Lost? But at times I walk away. I know it's wrong - I can kick myself for doing it. But at times I just can't stand it anymore. He should come first. His feelings should come first. But I goof at times and just make horrible choices.
So I know where you are coming from. But I know you do 99% good for your wife, so I hope you won't kick yourself too much for not understanding. It's hard, I know.
You are really planning a trip to California? Oh, my, I couldn't imagine doing that with him. Our trip to Chicago was very difficult - even with getting up and out of the car several times. I wish you well. Let us know how it goes. Did you write how long you will be gone?
When I packed for our trip to Chicago, the car was filled with things he needed - extra sets of medications, shower bench, swivel seat, bed rail, wheelchair, thickened drinks for travel, puddings for medication, his exercise equipment (weights, pulley, balls for throwing back and forth, bands for stretch exercises) and so much more. And that was for a short trip! You are amazing - taking your wife on this trip!!!!
I hope you are all well. My husband just realized I'm not in bed and called to me so I have to leave. Take care! Hope
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Friday June 25, 2010 7:35 PM
|
|
Hi, Hope,
You are so kind, thank you!
Yes, we are planning to fly out to California 7/15 and be back 7/22. When we were in her sisters place a couple of years ago, I ordered a walker and a bedside commode and kept in her house. Their house is wheelchair accessible. They have an almost walk-in shower with built in show bench, and I will have to bring a couple of portable shower grab bars with us. Last time I was able to get her in and out of the bed without a bedrail. If she needs one, we probably can find a home health supply company and buy one. We will have her new transport chair with us on the airplane. So that takes care of the large items for the trip.
For her exercises, we will not be able to bring everything with us except the stretch bands. We can do most of the mobility and flexibility exercises without equipments. For the ball, I am quite sure that I can get one in a store somewhere. Some strength exercises can be improvised, like fill up a couple of 2 liter bottles as weights. Missing a week of strength exercises would not be too bad. The gym at her sisters place actually has a NuStep, but I am quite sure that she will not go there to work out. After all, this will be a vacation, we will be spending time visiting.
When we go by car, like the on the Virginia trip last fall, indeed we do bring everything with us in the mini van, like the way you described. When we stay overnight in hotels, I had to make multiple trips in loading and unloading what she needs, using her transport chair to haul everything in and out.
So far, it seems to me that the most risky part of the trip is whether I can get her out of the door when the time comes. I do not want to make our house wheelchair accessible to sson, or else she will never want to climb those two little steps. I also do not want to do it after she has too much trouble climbing those two steps and causing her to be house bound. Usually when we have home improvement companies doing work in the neighborhood, they go door to door to offer free estimates. I usually turn them away. This time, someone from a window company came to the door, and I made an appointment with them next Monday to get some details in replacing the window in the dining area with a sliding patio door. Then I only need to rearrange the dining area and get a 5ft. ramp to get her in and out in a wheelchair. We will have to face it sooner or later, hopefully later.
I can see your profile now. I just sent you an email. Hope that it does not get deleted by your spam filter. Please let me know if you receive the email.
Best Regards,
Min-Shih
|
|
|
|
Hope
Posts: 831
Joined: Aug 2008
|
|
Tuesday June 29, 2010 9:53 AM
|
|
Hi!
Min-Shih, you are always thinking, always planning. Your ideas continue to amaze me!
When you go to California, you mentioned you will probably have to buy some things. Some of these items could be very expensive. (The bedrail I bought costs $79 and that was years ago.) Do you leave these items in CA so you won't have to buy them again? Or do you find a medical supply store that rents things like this? If so - that would be great to know - in case we ever fly again. But the horrors of that last trip still is so fresh in my mind. And now - as the illness has debilitated him so much more - the idea of getting him down the aisle to go to the bathroom - and then actually getting him in the bathroom (and out!) sounds impossible. Remember when I wrote about the last time we flew??? I got him in the bathroom but we couldn't get out! When I finally maneuvered him and got him out - he got stuck in the aisle. The other man was trying to get to the bathroom, my husband was walking with me to get out - and both men got stuck - behind to behind. (My plan of getting him to go sideways failed miserably!!! We were there so long - I remember the stewardess coming to me and telling me we HAD to sit down. Yeah, sure lady. YOU do it!!! You get him to move. Ha!!!
Then, not having a wheelchair (I hadn't bought the transport chair yet) - and trying to walk through the airport with the carryon bags and holding onto him - that was unreal. Not having the handicapped door open, and trying to get through the revolving door - was a nightmare. I felt like we were in a Charlie Chan movie (old time comedian). My husband took one step in the door- but was so slow- the revolving door was coming at him, so I pulled him back. When the door passed him, he took a step in the door, but the other door was coming, so I pulled him back. Plus I was carrying 4 carry-on bags, my purse, and holding onto his walker (that we were trying to use but wasn't helping!!!). People on the other side of the door looked on with horror. No one was behind us - or I would have just yelled for some help or for someone to call security! But fortunately, one of the people on the other side called security and they came to help us. But - my heavens - the travel on that trip just about did me in. No, let me rephrase that...the travel on that trip DID me in!!!
I'm sure you will have none of the troubles I did. I don't know what I could have done differently - but I'm guessing you would never have the same difficulties. You'd make sure the wheelchair was there, you'd make sure you had what you need to make the trip go more smoothly.
Many people with PD can't move in small areas. My husband is one of them. So, how do you get your wife up and down the aisle??? Is there a wheelchair small enough? How about getting to the seat??? That was awful for us!!! Even though we got the bulk seat (behind first class - so more room) - it was hard for me to get in front of him to help him step back to the seat. I have no idea how you do it - but I'm so impressed that you do!!! As I said - our flying days are over. If we can't get somewhere within 350 miles of driving, we aren't going! That will be so hard if some day we have grandchildren and can't fly to see them. But - we can only do what we can do! Things are hard enough for us as is!!!
I need to wake him up so we can start the moving routine (will take nearly 2 hours - without the shower!). I'd like to get him up and walking before we sit in the car - but I'll have to see how things go. I don't want to start the travel too late - since coming here took 9 hours.
Hope all is well with you Min-Shih and Everyone!!! Time to begin the adventure of getting home! Take care. Hope
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Tuesday June 29, 2010 6:06 PM
|
|
Hi, Hope,
Sometimes my wifes condition can change quickly. So yes, I do have to try learning and staying ahead. I do remember your misadventure in going to LA last time. For the flight, I think that I posted somewhere before. We have our own transport chair now, and we will bring that with us. I called the airline to let them know ahead of time. This part is fairly simple, like people traveling with babies bringing their own stroller with them. What is not very well known is that there is a something called a boarding chair, which is like a small wheelchair that fits the aisles. I called the airline to request a boarding chair, and flight attendants or airport personal will assist me to transfer her from the transport chair to the boarding chair, and then transfer her from the boarding chair to the seat. I also requested a boarding chair to stay onboard with the flight, so that I can use the boarding chair to take her to the bathroom. It is still somewhat of a challenge to get her from the boarding chair into the bathroom. This time I will put overnight absorbency underwear on her just in case we cannot get to the bathroom.
I plan to travel very light, so that I only have the transport to deal with. Last time we brought two carry on luggage, one hung in the back of the transport chair and the other one on her lap. This time I am thinking of the possibility of only bring one piece. Delta Airlines charges an arm and a leg per bag. So I am thinking whether I can mail some of the stuff to my sister-in-laws house beforehand and mail it back to myself the day before we leave. If I have to purchase a bedrail, I should be able to leave it in my sister-in-laws house. There are home health equipment rentals, but I have never tried them. So is it possible to fly? Yes, it is. Is it difficult? Yes, it is difficult. To make it not as difficult, sometimes I chose to incur extra expenses. On the expenses, my perspective is that they are kind of small compared with the airplane tickets, car rentals, and parking.
You mentioned that your range is 350 miles by car, We can stretch a little and make 400 miles. Then we stay overnight somewhere for one night to stretch our range to almost 800 miles. That was how we went to Virginia last year. We are still planning to do the same this September. Staying more than one night one the road would be lot mote difficult. Also we cannot go to places that involves flying and driving any substantial distance, which is more difficult than either flying or driving.
Hope that you have an uneventful trip back home.
Best Regards,
Min-Shih
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Tuesday June 29, 2010 10:07 PM
|
|
Hi, my friends,
My life is going to get a bit hectic. I got an estimate for the sliding door and they say that they can get it done before out CA trip. But I need to do some preparation work myself. Replacing the window by a sliding door involves cutting out the part of the wall below the window. If there is any electrical wiring inside that part of the wall, they need to be relocated or removed before hand, which will be my responsibility to hire someone else to do it or do it myself as the home owner. I know that there is an electrical socket on the wall. So the best case scenario is to remove the wiring to the socket and the socket intself. The worst case scenario is that there are wiring running across that portion of the wall. I could not quite figure out which is the case by looking at the wiring going up from the basement and my electrical wiring detector is not good enough to detect all the wires.
This afternoon I decided to start cutting out a small piece of dry wall around the socket to assess the situation. To my surprise, I found a number of wires running across the wall. The job is obviously bigger than I thought. I need to take all these wire out and re-route all these wires through the basement. If it was my younger days with more time on hand, that would not be a probloem for me. Feeling a little bit intimidated in my current situation, I started to call some handyman services to see if they will do the job at a reasonble prices. Not to my surprise, all my calls went to their respective answering machines and no one called back yet. After calming down and cutting out more dry wall to get a clearer picture, I started fo formulate a plan on how to re-route these wires through the basement by myself. Unless someone calls me back tomorrow and will do for a reasonable price in a timely manner, I will carry out my plan. I will just become busier. If you do not see me in the forum, that may be why.
Best Regards,
Min-Shih
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Thursday July 01, 2010 10:34 PM
|
|
Hi, Gabriele,
Yes, the sleep cop will issue you a warning ticket. Since I know that you live in Philadelphia, the date-time on your post is past your midnight!
I did not get to work on wiring today. so there is no shocking revealation. Wearing rubber socks is a good idea, but I do not know where to get them. But wearing leather shoes is good enough. I was a physicist, so sorry that I am going to pick on you. The purpose of wearing rubber socks or leather shoes is to insulate me from the ground, not to keep me grounded. If my feet are grounded and my hand touches a live wire, it is possible for electricity to go through my body to the ground, and in teh worst case scenario go through my hear. If I am insulated from the ground with one hand touches the positive end of a live wire and the other hand touches the negative end, electricity can go from one hand to the other, also possible to go through the heart. If I am insulated from teh ground and use only one hand, while putting the other hand in my pocket, no great damage will happen even if O touch a live wire. My hand will get a shock. But that is all. But I will pull the circuit breaker and test the wire first. I do not want any kind of accident.
Sorry for the physics lecture, time to go to bed.
Best Regards,
Min-Shih
|
|
|
|
rzxq2y
Posts: 1603
Joined: Jun 2009
|
|
Friday July 02, 2010 10:06 PM
|
|
Hi, Colette,
Good to see you posting more often again. No, I have not tried the particular method. But I tried quite a few other methods to no avail. That is part of her personality since the time I met her. Even when she says she needs me to do somethin at my leisure, it only means gettin it down before next time she asks. To her, whether something can wait or not is a matter of opinion. So if explain to her why something can wait, she usually just regards it as a difference in opinion. Now it just gets harder, because I can barely hear her and understand her. So if she wants to say something, urgent or not, I basically have to drop what I am doing and get close enough to her to understand what she is trying to say.
This problem is really one of my lesser concerns. My main concerns are her mobility and safety. Other things we more or less learned how to live with each other after 40 years of marriage.
Best Regards,
Min-Shih
|
|
|
|
Hope
Posts: 831
Joined: Aug 2008
|
|
Saturday July 03, 2010 6:54 PM
|
|
Hi!
I totally understand what you are going through! My husband mumbles a bunch or words - mainly breathy words with no real voice coming out. I say, "Take a deep breath. Give me one word only." He takes a big breath and then mouths a bunch of words - of which I have no chance of understanding!!! We go through this several times. If I'm in a patient mood, I smile and say, "Let's take one word at a time. Just one. Take a deep breath. Good. Now say just one word." If he says one word, I repeat it and ask him to say the next word. Hew often says 2 words - repeating what he has already said. Again, if I'm patient, I deal with it. If I'm not - I want to tear out my hair and scream "bloody murder!" but I don't. At times, i just have to drop it - and not answer him since I have no idea what he is saying. I know that's bad but at times, I don't know what else to do.
Today was a good day - until we got home. He suddenly got so tired, couldn't talk, couldn't walk. I had to give him a pill and worried he wouldn't swallow and would choke. He wanted his pill with ice cream (softened and thickened) and the pill actually went down well. Since I still worry about him choking when taking the pill (smashing it tastes so bad he won't take it and cutting it bothers him - on the cut edges) - I still put up the garage door when I give him a pill in case I have to call 911.
But all is well - and he's resting now. Gives me a moment to say hi to all of you!!! Take care. I hope your evening will be a calm and peaceful one! Hope
|
|
|
|
|
The flash is really pretty too. For those who are humor impaired it's a joke. 
