Mom continues to worsen. She was coming along nicely at rehab until they took her off of the antibiotic for c.diff. The infection returned, she had a seizure, and we’ve added a UTI and possible pneumonia. She is back in the hospital. They are replacing her current antibiotic with a much stronger one and getting a doctor from infectious diseases to consult.
My leaving the hospital is dangerous for her - the seizure information did not travel with her from rehab, her history somehow shows a prior stroke when she never had one, and they have a DNR order on file when instead she should be full code. I’m afraid to even go down the hall to the bathroom.
I watch her now as her body twitches under the bright white hospital sheets. Her mouth is open and dry; her bald head sweaty and cold. And I think - this is what we’ve come to and in such a short time. Three month ago she was walking on her own, still giving me lip, delighting at my husband’s attention, downing her double cheeseburgers with gusto. And now her speech is slurred, she can barely move and I have to beg her to eat a banana.
I am reminded again how the one thing we can count on in life is change; that it is futile to cling to any one state. Even her current medical condition will be temporary – she will either get better or worse. So I strive to stay unattached, to float above what is happening; to report the facts with accuracy and keep everyone on track, but to not get swallowed with emotion. I’m doomed if I do. And if I’m doomed, Ma has no chance.
Saturday, August 28, 2010
Friday, August 20, 2010
A Month of Hospital Stays
The last month has been a particularly trying one for me and Mom. She has had two hospital stays within a three week period and is now in a rehab facility to regain some of the strength she lost after being contained to her bed for so long.
To be brief:
• First hospital stay was due to infectious colitis (a virus or bacteria that attacks the colon and causes inflammation)
• Second hospital stay was for c.diff (Clostridium difficile, often called "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. diff most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.)
What was really shocking to me, and what I’d like to discuss here for those of you who have parents in and out of hospitals, was the mistake the hospitals made with mom’s medications. I am curious if anyone else has experienced the same.
My mother’s medication list and schedule were faxed over from the rest home to the first hospital where a worker transcribed the list onto the hospital’s form. The worker apparently didn’t read closely enough and transcribed “300 mgs of seroquel, ½ tablet (150 mgs), once in the evening” to “300 mgs of seroquel once per day.”
Luckily I was there when my mother was being given her morning meds and was able to clear up the issue before she was given the wrong dose at the wrong time. I chalked this up to a one chance in a thousand mistake until the same exact transcription error happened at the second hospital which is totally unaffiliated with the first!
Unfortunately I was not there to catch the error and Ma had been given two doses over two mornings. Her blood pressure dropped to below 85 on the top, she was extremely weak, slurring her words, and unable to sit up. The doctors became very concerned and rechecked her meds and noticed the error.
Needless to say, the first thing I did when going into the rehab center was personally check the med list with the nurse, pointing out the seroquel doses specifically and requesting to see the transcription when it was done.
It is so clear that my duties as mom’s caregiver did not end when she went into the rest home. In fact, I’ve had to become a more vigilant advocate of my mother’s health now that we are dealing with more organizations responsible for her care (rest home, hospitals, etc.).
Good news is she is on the road to recovery and we believe her rehab stay will only be about a week long. After that, she’ll return to the rest home and I’ll return to my consideration of taking her back home, which seems more unlikely after these hospital stays.
To be brief:
• First hospital stay was due to infectious colitis (a virus or bacteria that attacks the colon and causes inflammation)
• Second hospital stay was for c.diff (Clostridium difficile, often called "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. diff most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.)
What was really shocking to me, and what I’d like to discuss here for those of you who have parents in and out of hospitals, was the mistake the hospitals made with mom’s medications. I am curious if anyone else has experienced the same.
My mother’s medication list and schedule were faxed over from the rest home to the first hospital where a worker transcribed the list onto the hospital’s form. The worker apparently didn’t read closely enough and transcribed “300 mgs of seroquel, ½ tablet (150 mgs), once in the evening” to “300 mgs of seroquel once per day.”
Luckily I was there when my mother was being given her morning meds and was able to clear up the issue before she was given the wrong dose at the wrong time. I chalked this up to a one chance in a thousand mistake until the same exact transcription error happened at the second hospital which is totally unaffiliated with the first!
Unfortunately I was not there to catch the error and Ma had been given two doses over two mornings. Her blood pressure dropped to below 85 on the top, she was extremely weak, slurring her words, and unable to sit up. The doctors became very concerned and rechecked her meds and noticed the error.
Needless to say, the first thing I did when going into the rehab center was personally check the med list with the nurse, pointing out the seroquel doses specifically and requesting to see the transcription when it was done.
It is so clear that my duties as mom’s caregiver did not end when she went into the rest home. In fact, I’ve had to become a more vigilant advocate of my mother’s health now that we are dealing with more organizations responsible for her care (rest home, hospitals, etc.).
Good news is she is on the road to recovery and we believe her rehab stay will only be about a week long. After that, she’ll return to the rest home and I’ll return to my consideration of taking her back home, which seems more unlikely after these hospital stays.
Friday, July 16, 2010
Another conversation with the Alzheimer’s Association
I’ve burned up the Alzheimer’s Association’s telephone lines again. What an amazing resource. We discussed the upcoming visits with my family, the wedding, and taking mom back home. Ma will absolutely come to my house for a visit with her family this Sunday. Her brother, sister, dearest friend and niece will be visiting for a traditional Italian dinner (with a little vegan twist thrown in for good measure). I’ll have Ma arrive early to get acclimated to the house again (it’s been almost three weeks…disgraceful) before she is inundated with a lively bunch of loving family.
As for the wedding, I looked at it more closely, away from the initial knee-jerk anger and frustration. The wedding is over an hour away and right when Ma tends to sundown. The main activity will be close to her bedtime. It will be dark with loud music and lots of energetic people. OK, even I agree (now) that would be a recipe for disaster. I took mom to the bridal shower a month ago and that was less stimulating. At least she got to participate in some of the celebratory activities.
Mom coming home was an interesting discussion. There was hesitancy in the representative’s voice at first, but we attacked the issues from every angle. Will I be able to get the resources Mom had before (funded daycare, an aid to help in the house, etc.)? How about a visiting nurse to keep an eye on her legs and her now very swollen elbow? What about respite for me and Dan? How will we wander-proof the house?
Good news is I am on the right track with researching all of these and I will not have her come home until I have things as much in order as I can. I owe that to both of us.
So, I’m feeling scared but a bit more empowered. I’m sure those two very conflicting feelings will living side by side within me for a long time.
As for Ma, we are getting closer. Hang in there Gilda-Bear!
Sunday, July 11, 2010
I'm Not Buying It
I don’t consider myself an ignorant person. I’m diligent in my research, in getting advice, direction, input from those who are more experienced than I, in seeking out every resource and data. And though the feedback is consistent, I’m still not totally buying it. Even with a measure of proof, I still think my mother is being denied more than she needs to be.
We are in the middle of a heat wave here in the North East. Temperatures have gone above 90 for close to 5 days. It’s been unbearable. One thing Mom always hated was the heat. She has no tolerance for it, and neither do I. So this week, Ma stayed in the very comfortable air-conditioned rest home without any outside excursions; we just had many meaningful visits inside.
I could clearly see by yesterday, the seventh day she’s been at the home without going out, that she was calmer, more engaged and less confused. The Director of Nursing and I discussed the almost glaring change in my mother’s demeanor. I saw the benefits. I am not blind.
And then I spoke about an upcoming wedding we are invited to, and visits from relatives over the next two weeks.
“Neither will be good for her Lisa. Your family can visit here or you can take her out. But again, going to your home will be too confusing for her.” She continued, “…and a wedding would be way too stimulating for her.”
And that’s when I lost it…again. Is my mother a prisoner? The disease is already usurping her mind. Now it encroaches upon her ability to enjoy a celebration or a day at my house with family? I just can’t abide by this, I can’t accept it. I feel like a mother whose child is disabled and being told he/she can’t jump a fence or ride a bike. The mother adamantly refuses to accept what she is being told is truth and the child soars to heights no one imagined.
Well, I am not going to sit back and watch Alzheimer’s take everything from my mother. I am NOT going down without a fight. I will never believe the right thing is denying her enjoyment. There has to be some sort of balance. She loves being around her family. Dementia has not changed that. If the venue is too stimulating, we’ll leave. But I am not going down without trying.
We are in the middle of a heat wave here in the North East. Temperatures have gone above 90 for close to 5 days. It’s been unbearable. One thing Mom always hated was the heat. She has no tolerance for it, and neither do I. So this week, Ma stayed in the very comfortable air-conditioned rest home without any outside excursions; we just had many meaningful visits inside.
I could clearly see by yesterday, the seventh day she’s been at the home without going out, that she was calmer, more engaged and less confused. The Director of Nursing and I discussed the almost glaring change in my mother’s demeanor. I saw the benefits. I am not blind.
And then I spoke about an upcoming wedding we are invited to, and visits from relatives over the next two weeks.
“Neither will be good for her Lisa. Your family can visit here or you can take her out. But again, going to your home will be too confusing for her.” She continued, “…and a wedding would be way too stimulating for her.”
And that’s when I lost it…again. Is my mother a prisoner? The disease is already usurping her mind. Now it encroaches upon her ability to enjoy a celebration or a day at my house with family? I just can’t abide by this, I can’t accept it. I feel like a mother whose child is disabled and being told he/she can’t jump a fence or ride a bike. The mother adamantly refuses to accept what she is being told is truth and the child soars to heights no one imagined.
Well, I am not going to sit back and watch Alzheimer’s take everything from my mother. I am NOT going down without a fight. I will never believe the right thing is denying her enjoyment. There has to be some sort of balance. She loves being around her family. Dementia has not changed that. If the venue is too stimulating, we’ll leave. But I am not going down without trying.
Friday, July 2, 2010
Advice needed - Considering making a huge change
I’m thinking of taking Ma back to live with me again and would appreciate hearing from anyone who cared for their loved ones suffering from Alzheimer’s at home.
Mom lived with us for a year when she was first diagnosed. When she started wandering, it was advised by all of her doctors, her social worker, and her psychiatrist that she move to a rest home. I heard horror stories of how wanderers got out of the house, even when family members were sleeping in the hallways right outside their bedroom door. I’ve also heard of the emotional and physical toll the disease takes on caretakers.
Of course, I know that firsthand. Caring for my mother almost sent me to the hospital twice. So why would I consider doing it again? For a couple of reasons.
1) No matter how wonderful the rest home / nursing facility, there is nothing like being cared for by your own daughter / family. And even if the patient to aid ratio is excellent (like it is where my mother is), there is no better ratio than 1:1.
2) After hearing from both the Alzheimer’s Association and the Director of Nursing at the rest home that my mother is not benefiting at all from me taking her here and then returning her, I can’t live with her coming to my house just once a week. Is that part about me? It certainly is. I can’t deal with it. My heart can’t take it. Keeping her away from the place where I can dote on her and keep her swollen legs up, and feed her pasta, having her away from the place where she feels most comfortable and safe, it is all unacceptable to me.
So what would I do differently?
First, I would give up my business. I would no longer work. I have someone that I trust completely and would hand over all of my clients to her. We would then become a one income household but we can swing it with a few adjustments.
Second, we’ve considered moving closer to family. Right now we live 2 hours away from my brother and an hour away from aunts and cousins. Being closer to them would at the very least, lend me quicker emotional and “in a pinch” support.
Third, I would have a nurse come a few times a week to give me a break and I would have my mom go to a program that starts later in the day so that she can sleep in a bit. This may help avoid the knock-down, drag out fights we had in the past that usually left me in a puddle.
Putting my mother in a home never sat well with my heart, and though my head got it, there was a part of my brain that said I could keep her at my house if I arranged things differently.
But everyone is telling me its impossible – doctors, nurses, family. She is too sick and I am of a “delicate” nature.
I need someone to tell me I can. I need someone who has done it to tell me it’s doable.
I appreciate any advice...
Mom lived with us for a year when she was first diagnosed. When she started wandering, it was advised by all of her doctors, her social worker, and her psychiatrist that she move to a rest home. I heard horror stories of how wanderers got out of the house, even when family members were sleeping in the hallways right outside their bedroom door. I’ve also heard of the emotional and physical toll the disease takes on caretakers.
Of course, I know that firsthand. Caring for my mother almost sent me to the hospital twice. So why would I consider doing it again? For a couple of reasons.
1) No matter how wonderful the rest home / nursing facility, there is nothing like being cared for by your own daughter / family. And even if the patient to aid ratio is excellent (like it is where my mother is), there is no better ratio than 1:1.
2) After hearing from both the Alzheimer’s Association and the Director of Nursing at the rest home that my mother is not benefiting at all from me taking her here and then returning her, I can’t live with her coming to my house just once a week. Is that part about me? It certainly is. I can’t deal with it. My heart can’t take it. Keeping her away from the place where I can dote on her and keep her swollen legs up, and feed her pasta, having her away from the place where she feels most comfortable and safe, it is all unacceptable to me.
So what would I do differently?
First, I would give up my business. I would no longer work. I have someone that I trust completely and would hand over all of my clients to her. We would then become a one income household but we can swing it with a few adjustments.
Second, we’ve considered moving closer to family. Right now we live 2 hours away from my brother and an hour away from aunts and cousins. Being closer to them would at the very least, lend me quicker emotional and “in a pinch” support.
Third, I would have a nurse come a few times a week to give me a break and I would have my mom go to a program that starts later in the day so that she can sleep in a bit. This may help avoid the knock-down, drag out fights we had in the past that usually left me in a puddle.
Putting my mother in a home never sat well with my heart, and though my head got it, there was a part of my brain that said I could keep her at my house if I arranged things differently.
But everyone is telling me its impossible – doctors, nurses, family. She is too sick and I am of a “delicate” nature.
I need someone to tell me I can. I need someone who has done it to tell me it’s doable.
I appreciate any advice...
Wednesday, June 23, 2010
Feet Like Stuffed Calamari
My mother’s feet look like stuffed calamari before they get thrown into the gravy on Christmas Eve. The pinkish-white skin is pulled taut over the top of her foot and up past her ankles. They’ve been like this for a month now and though I’ve agreed with all the steps the rest home has suggested, getting my mother to comply is a different story.
The most immediate and obvious potential fix is to get my mother out of flip flops and into sneakers. I purchased the suggested neon white and clunky footwear but one look at them and Ma was having none of it. Who knew she was a footwear fashionista. When I asked the rest home to try their best getting the sneakers on my mother, I got the raised eyebrows. “We’ll try Lisa, but you know your mother.” I certainly do.
So we’ve moved to Lasix. Not much movement in terms of the swelling so the next step is to up the dosage to 20 mgs instead of the 10 mgs she is taking. We’ll see how that works.
Third suggestion, and the one that sends shivers up everyone’s spine - get her into those
death grip hose. The floor nurse and I had a good laugh over that. If we can’t get her into sneakers how could we possibly get her into those? (“You try.” “No, YOU try!”)
And here is one of the many reasons I chose this particular rest home - they will not violate the space or the wishes of the resident unless it is absolutely necessary. They are watching my mother’s feet closely, checking them multiple times a day. Whenever the doctor is in house, he checks them as well. If there is growing concern, the level of adamancy with her will increase. Otherwise, she gets to go sneakerless.
As for me, I avoid looking at her feet as much as possible. I hate stuffed calamari.
The most immediate and obvious potential fix is to get my mother out of flip flops and into sneakers. I purchased the suggested neon white and clunky footwear but one look at them and Ma was having none of it. Who knew she was a footwear fashionista. When I asked the rest home to try their best getting the sneakers on my mother, I got the raised eyebrows. “We’ll try Lisa, but you know your mother.” I certainly do.
So we’ve moved to Lasix. Not much movement in terms of the swelling so the next step is to up the dosage to 20 mgs instead of the 10 mgs she is taking. We’ll see how that works.
Third suggestion, and the one that sends shivers up everyone’s spine - get her into those
death grip hose. The floor nurse and I had a good laugh over that. If we can’t get her into sneakers how could we possibly get her into those? (“You try.” “No, YOU try!”)
And here is one of the many reasons I chose this particular rest home - they will not violate the space or the wishes of the resident unless it is absolutely necessary. They are watching my mother’s feet closely, checking them multiple times a day. Whenever the doctor is in house, he checks them as well. If there is growing concern, the level of adamancy with her will increase. Otherwise, she gets to go sneakerless.
As for me, I avoid looking at her feet as much as possible. I hate stuffed calamari.
Saturday, June 19, 2010
A Conversation with The Alzheimer's Association
About two days after my last post, I called the Alzheimer’s Association and had a wonderfully informative talk with an advisor from their 24 / 7 hotline. What a great resource! The numbers for those who might need them are:
24/7 Helpline
Contact us for information, referral and support.
tel: 1.800.272.3900
tdd: 1.866.403.3073
e-mail: info@alz.org
I spoke about the dilemma I was facing with my mother – her confusion about where she was going was when it was time to go back to the rest home.
The advisor said that taking her to my house so frequently could in fact be contributing to the confusion because, as we know, Alzheimer sufferers do best when their surroundings stay consistent. However, she was surprised that Mom wasn’t new to the rest home, that it had been 6 months since she first arrived, and hence, enough time to get acclimated to her surroundings, as much as one can with the disease.
Be that as it may, she had three suggestions:
1) Keep mom at the home 6 out of 7 days.
2) When I visit during those 6 days, I must make the visits meaningful, i.e., do something specific with her like play cards, join in on an activity, go for a walk, take her shopping, etc.
3) Take her ‘home’ just one day out of the week.
It has been 10 days and I have not been able to stick to the 6 out of 7 days, but I have done better, taking her here only three times instead of five. I have also made the visits at the home more lively. However, I am finding that mom can do less than I thought. We tried playing cards, and though she used to play every single week, she could not remember how to play gin rummy or any of the poker games.
Our walk to the park where I took Frances was lovely. We watched a young man exercise his Australian Cattle Dog. He had his dog perform many tricks for my mother and she was delighted.
We had a spa day where I took her for a manicure and pedicure. She went through her diaper onto her pants. I had to ask for a towel so that she would not further wet the customer chair. And though she has had a manicure several times, she thought this was her very first. That’s a benefit to the disease. You relive the things you love for the first time over and over again.
But, I have gotten two calls from her this week, convinced it was I this time who needed to be picked up from school. And though she was speaking with me, she was also speaking of me, “Lisa, who is picking up…who’s picking Lisa up from school?”
Again I used Josie and again it worked.
There is no question her Alzheimer’s is progressing. And I’ll get better at trying the suggestions made by the Alzheimer’s Association. It is just difficult not taking my mother to the place she feels most safe and most comfortable. I also find that she can become more delusional when she stays longer periods at the home.
Damned if I do and damned if I don't. There seems to be no right and no wrong to this disease.
24/7 Helpline
Contact us for information, referral and support.
tel: 1.800.272.3900
tdd: 1.866.403.3073
e-mail: info@alz.org
I spoke about the dilemma I was facing with my mother – her confusion about where she was going was when it was time to go back to the rest home.
The advisor said that taking her to my house so frequently could in fact be contributing to the confusion because, as we know, Alzheimer sufferers do best when their surroundings stay consistent. However, she was surprised that Mom wasn’t new to the rest home, that it had been 6 months since she first arrived, and hence, enough time to get acclimated to her surroundings, as much as one can with the disease.
Be that as it may, she had three suggestions:
1) Keep mom at the home 6 out of 7 days.
2) When I visit during those 6 days, I must make the visits meaningful, i.e., do something specific with her like play cards, join in on an activity, go for a walk, take her shopping, etc.
3) Take her ‘home’ just one day out of the week.
It has been 10 days and I have not been able to stick to the 6 out of 7 days, but I have done better, taking her here only three times instead of five. I have also made the visits at the home more lively. However, I am finding that mom can do less than I thought. We tried playing cards, and though she used to play every single week, she could not remember how to play gin rummy or any of the poker games.
Our walk to the park where I took Frances was lovely. We watched a young man exercise his Australian Cattle Dog. He had his dog perform many tricks for my mother and she was delighted.
We had a spa day where I took her for a manicure and pedicure. She went through her diaper onto her pants. I had to ask for a towel so that she would not further wet the customer chair. And though she has had a manicure several times, she thought this was her very first. That’s a benefit to the disease. You relive the things you love for the first time over and over again.
But, I have gotten two calls from her this week, convinced it was I this time who needed to be picked up from school. And though she was speaking with me, she was also speaking of me, “Lisa, who is picking up…who’s picking Lisa up from school?”
Again I used Josie and again it worked.
There is no question her Alzheimer’s is progressing. And I’ll get better at trying the suggestions made by the Alzheimer’s Association. It is just difficult not taking my mother to the place she feels most safe and most comfortable. I also find that she can become more delusional when she stays longer periods at the home.
Damned if I do and damned if I don't. There seems to be no right and no wrong to this disease.
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