In sickness and in health
- Thread starter vltsra
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Thanks for all the kind words. OK I'm going to vent now. I am dealing with a number of injuries...multiple bruises on my arms, legs, shoulder and chest (shoulder strap), tweaked back, stiff neck, and likely small fracture in my sternum. Dealing with multiple calls from various insurance agencies including my own adjuster who wanted me to tell him what the other car was or get the information from the police (it was white as I recall...then I was taken away in an ambulance). Is that not your job? Oh, and the cat scan on my neck in the emergency room also showed a growth in my thyroid so let's add another worry to my ever-growing list. Going in next week for an ultrasound on that.
Yesterday I spent the day taking my bike to the bike shop (needed help loading and unloading it) in my PALS' truck that he never let me drive before, and then picking up a rental car, among the other CALS duties. The bike is damaged, and all of the carbon components will need to be replaced, but I'm hoping the frame is OK. I won't be able to ride it for a while anyway. Then the sprinklers broke, and I had to call someone to come and look at them. Of course the minute he came over they started working again.
I was thinking if I wasn't a CALS that my husband would probably be taking care of me. The rental car clerk asked my why I wasn't at home resting. Should I explain it to you? Last night there were only 2 wakeups so I guess that's better than most nights. This morning I got up, made coffee and breakfast for my PALS, served him breakfast (he can still hold a fork and eat for now), got his vitamins, moved the bipap into the TV room and set it up, cleaned the hoses, made the bed, cleaned up after breakfast, did the nasal spray and the cough assist, and gave him a bath. After bath, lunch. Then I paid his bills and did his deposit slip; I'm off to the post office and bank next. Then it's ROM and then dinner. He also has been somewhat more critical of late as well, guess I'm not doing everything correctly. Thankful for pain pills.
I guess I should stay off Facebook, right? I looked this morning and got a notice that I had been mentioned in a post. The post was from a woman who hasn't been in touch in 9 months at all, but she and her husband came over on Thursday to visit my PALS (not knowing I had been in an accident) and brought dinner. I appreciate it, but honestly, let's now get on Facebook and talk about how my husband needs help now and congratulate ourselves for being so giving???? I suppose dinner once in 9 months is helpful but I am the one who is doing everything.
OK done ranting. The accident injuries will heal. Hope the thyroid is nothing.
V
Yesterday I spent the day taking my bike to the bike shop (needed help loading and unloading it) in my PALS' truck that he never let me drive before, and then picking up a rental car, among the other CALS duties. The bike is damaged, and all of the carbon components will need to be replaced, but I'm hoping the frame is OK. I won't be able to ride it for a while anyway. Then the sprinklers broke, and I had to call someone to come and look at them. Of course the minute he came over they started working again.
I was thinking if I wasn't a CALS that my husband would probably be taking care of me. The rental car clerk asked my why I wasn't at home resting. Should I explain it to you? Last night there were only 2 wakeups so I guess that's better than most nights. This morning I got up, made coffee and breakfast for my PALS, served him breakfast (he can still hold a fork and eat for now), got his vitamins, moved the bipap into the TV room and set it up, cleaned the hoses, made the bed, cleaned up after breakfast, did the nasal spray and the cough assist, and gave him a bath. After bath, lunch. Then I paid his bills and did his deposit slip; I'm off to the post office and bank next. Then it's ROM and then dinner. He also has been somewhat more critical of late as well, guess I'm not doing everything correctly. Thankful for pain pills.
I guess I should stay off Facebook, right? I looked this morning and got a notice that I had been mentioned in a post. The post was from a woman who hasn't been in touch in 9 months at all, but she and her husband came over on Thursday to visit my PALS (not knowing I had been in an accident) and brought dinner. I appreciate it, but honestly, let's now get on Facebook and talk about how my husband needs help now and congratulate ourselves for being so giving???? I suppose dinner once in 9 months is helpful but I am the one who is doing everything.
OK done ranting. The accident injuries will heal. Hope the thyroid is nothing.
V
Jrzygrl
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Rant away. I truly believe that unless you have lived this nightmare, you cannot understand. How do you explain what our existsance (I purposely did not use the word life) is like?
Hugs, V. Hope the idiots stay away for a bit.
Hugs, V. Hope the idiots stay away for a bit.
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V, I will never know how some people can look in the mirror. All I know is that every present and former CALS reading this can do so with honor.
Best,
Laurie
Best,
Laurie
Ken15
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V,
Completely empathize with your predicament. This type of situation is ever present in back of every CALS mind: who will take care of my PALS if I am out of commission myself?
During our (now) 21 month battle with this disease, I myself became a patient at the Mayo Clinic, not once but twice. In 2018, I was referred there for a possible sarcoma in the rear of my abdomen; fortunately, the biopsy was negative. And then, at the beginning of this year, I was again referred to the Mayo for possible multiple myeloma; after extensive testing, it was determined to be MGUS, an asymptomatic form.
The anxiety level and thought processes go into overdrive as one contemplates all the scenarios and possible outcomes of being laid up and unable to care for our PALS. In football, this would be called "piling on" and subject to a 15 yard penalty - unfortunately, the only penalty assessed here is on the victim, not the perpetrator.
At a recent local monthly ALS caregivers luncheon, a CALS mentioned that she had signed a "retainer" with a local home health care company; in the event of her becoming incapacitated, the company would step in and perform a specified set of CALS duties for her PALS. I imagine there are different levels of support you can "retain". I meant to look into it, but haven't.
I hope you find the strength and perseverance, and get the support you need to get through this. For sure, all the CALS here are with you in spirit.
Ken
Completely empathize with your predicament. This type of situation is ever present in back of every CALS mind: who will take care of my PALS if I am out of commission myself?
During our (now) 21 month battle with this disease, I myself became a patient at the Mayo Clinic, not once but twice. In 2018, I was referred there for a possible sarcoma in the rear of my abdomen; fortunately, the biopsy was negative. And then, at the beginning of this year, I was again referred to the Mayo for possible multiple myeloma; after extensive testing, it was determined to be MGUS, an asymptomatic form.
The anxiety level and thought processes go into overdrive as one contemplates all the scenarios and possible outcomes of being laid up and unable to care for our PALS. In football, this would be called "piling on" and subject to a 15 yard penalty - unfortunately, the only penalty assessed here is on the victim, not the perpetrator.
At a recent local monthly ALS caregivers luncheon, a CALS mentioned that she had signed a "retainer" with a local home health care company; in the event of her becoming incapacitated, the company would step in and perform a specified set of CALS duties for her PALS. I imagine there are different levels of support you can "retain". I meant to look into it, but haven't.
I hope you find the strength and perseverance, and get the support you need to get through this. For sure, all the CALS here are with you in spirit.
Ken
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That vent was good for the soul of every CALS on this forum, so thank you V. I hope it let off just a little pressure, as it has normalised some pressure for everyone here.
I wouldn't want to start on the grand standing of people who would do one thing for Chris or I and then brag on it. But I will forever love the few that did many little things in the background that were huge to me and have never been forgotten. I am sure I am the only person that knows of those ones, and now they are all the more precious to me!
Those injuries add up to a sucking LOT. Please let us know about the thyroid - I'm going to be bold and say it's going to be fine and send all my positive thoughts in that direction for you
I wouldn't want to start on the grand standing of people who would do one thing for Chris or I and then brag on it. But I will forever love the few that did many little things in the background that were huge to me and have never been forgotten. I am sure I am the only person that knows of those ones, and now they are all the more precious to me!
Those injuries add up to a sucking LOT. Please let us know about the thyroid - I'm going to be bold and say it's going to be fine and send all my positive thoughts in that direction for you
Narrowminded
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V I’m so glad you could vent all of that. Venting here is what kept me sane through the process. And yes, it helped many this week and will help many in the future should they find your thread.
I’m praying your bike is a somewhat easy fix at this point.
And yes the grandstanding is something I don’t want to get into either.
Ken - that healthcare retainer is unfortunately only as good as the agency is at retaining staff that is trained. If the nurses have not been out to be trained to the particular PALs, it’s not worth a lot. Add on the fact of nurse call offs and not having anyone available.... I could make the list go on and on. I lived through it. Maybe it’s better in SC.
Val I too feel that the lump won’t be anything. As far as you know you haven’t had any symptoms so that is a very good sign.
Hugs
I’m praying your bike is a somewhat easy fix at this point.
And yes the grandstanding is something I don’t want to get into either.
Ken - that healthcare retainer is unfortunately only as good as the agency is at retaining staff that is trained. If the nurses have not been out to be trained to the particular PALs, it’s not worth a lot. Add on the fact of nurse call offs and not having anyone available.... I could make the list go on and on. I lived through it. Maybe it’s better in SC.
Val I too feel that the lump won’t be anything. As far as you know you haven’t had any symptoms so that is a very good sign.
Hugs
pittsburghgal
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V, I pray for a speedy recovery from your injuries and that your thyroid lump will be benign.
We CALS get no break from our caregiving responsibilities when we are not feeling well. I badly injured my foot last Thursday and am having a lot of pain when walking. I just want someone to take care of me for once but, of course, that's not going to happen. We just struggle onward.
Ken, I too fear what will happen to my PALS if I am out of commission. I chose a hospice that would transfer my husband to their small inpatient facility for up to 5 days if I became incapacitated just for this reason.
Sharon
We CALS get no break from our caregiving responsibilities when we are not feeling well. I badly injured my foot last Thursday and am having a lot of pain when walking. I just want someone to take care of me for once but, of course, that's not going to happen. We just struggle onward.
Ken, I too fear what will happen to my PALS if I am out of commission. I chose a hospice that would transfer my husband to their small inpatient facility for up to 5 days if I became incapacitated just for this reason.
Sharon
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Holy cow! From this day forward it's V as in VENT!
Hope you heal quickly and hubby will be less critical (not only in than timespan). Still keeping my fingers crossed for that Yellowstone trip or just a couple weeks without idiots, hurt and havok.
Hope you heal quickly and hubby will be less critical (not only in than timespan). Still keeping my fingers crossed for that Yellowstone trip or just a couple weeks without idiots, hurt and havok.
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Update...I went to have the thyroid ultrasound and biopsy. The endocrinologist told me that 40% of people have thyroid nodules and she didn't see anything she was really concerned about. I'll have to wait 2 weeks to find out for sure but I suspect it is benign.
I'm still suffering from pain in my fractured sternum from the accident. Thought it was subsiding until I had to cough this morning. Coughing and sneezing are agony.
Went to pick up my new car from the dealership last night and there is a ding in the rear passenger door. My PALS told me not to take the car. So once again I am driving his truck around until they resolve it.
The contractor was here yesterday and started the process of clearing out space for the elevator. My neighbors, who are selling their multi-level house, told me they wish they had thought of an elevator instead. So I suppose it will be fine in the long run as well as for now.
Meanwhile time unfortunately marches on. My PALS' right hand is ever weaker, his gait is becoming more compromised as his left foot drops. He has an AFO but does not want to wear shoes around the house. He also doesn't like it for the few steps we have to reach the bedroom. He complains of being tired all the time and needs his bipap more and more. I'm still planning to do the Yellowstone trip with him...he said not to expect much and I don't. If he just wants to sit and watch Old Faithful that is fine with me. I am bringing his portable DVD player and his collection of guy movies in case he just wants to laze around and watch Rambo for the 108th time. Anyway I am having to come to terms with the fact that I'm going to lose my husband and it hurts far more than anything.
V
I'm still suffering from pain in my fractured sternum from the accident. Thought it was subsiding until I had to cough this morning. Coughing and sneezing are agony.
Went to pick up my new car from the dealership last night and there is a ding in the rear passenger door. My PALS told me not to take the car. So once again I am driving his truck around until they resolve it.
The contractor was here yesterday and started the process of clearing out space for the elevator. My neighbors, who are selling their multi-level house, told me they wish they had thought of an elevator instead. So I suppose it will be fine in the long run as well as for now.
Meanwhile time unfortunately marches on. My PALS' right hand is ever weaker, his gait is becoming more compromised as his left foot drops. He has an AFO but does not want to wear shoes around the house. He also doesn't like it for the few steps we have to reach the bedroom. He complains of being tired all the time and needs his bipap more and more. I'm still planning to do the Yellowstone trip with him...he said not to expect much and I don't. If he just wants to sit and watch Old Faithful that is fine with me. I am bringing his portable DVD player and his collection of guy movies in case he just wants to laze around and watch Rambo for the 108th time. Anyway I am having to come to terms with the fact that I'm going to lose my husband and it hurts far more than anything.
V
Narrowminded
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Hugs V. I’m happy to hear the Endo doesn’t think there is anything to worry about with your thyroid.
Praying for a good Yellowstone trip for you and DH.
Yes, it hurts like hell. Sending more hugs.
Praying for a good Yellowstone trip for you and DH.
Yes, it hurts like hell. Sending more hugs.
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Thanks to all for your kind words. We are off to Yellowstone tomorrow morning. It will take us 3 days to drive there because I have promised to take breaks and go slowly. My PALS is nervous about going as he needs the bipap more than not these days, but I have promised him he can have the bipap as much as he needs in the car and in the hotels. I have also promised that if he is really struggling we can come home. I hope he will enjoy this adventure - he has always loved our national parks. I fear it is our last; he is a reluctant traveler, even before ALS, but I don't want to look too far ahead. I'm hoping I will be sharing some photos on Stories of Hope.
V
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