jbj117
07-28-2003, 01:11 PM
Hello! Being that there are several caregivers on this site, I'm hoping that you will share with me your tools and resources for dealing with the stresses and restrictions involved in this responsibility. My apologies for the length this post is probably going to be! I have been caring for my mother, 81, full time for the past 3 years since her stroke, and part-time for the last 10 years while she has been in ill health. She converted my basement into an apartment for herself so I could more easily assist her, and she lived there for 6 years, fairly independently, until a few months after her stroke. We moved her into my home 2 years ago when I broke my ankle and couldn't navigate the stairs to care for her in her apartment. She's been here ever since, and we rent out the apartment. At any rate, she is mobile with a walker, able to feed herself, take care of basic hygiene with bathing assistance but needs a wheelchair outside of the home. She has a delightfully pleasing demeanor, but needs constant supervision and guidance. It's like having a toddler over whom you have no control, who is into everything, always wanting to "help", hides things, moves things, rearranges things, makes messes, does inexplainable things...you get the idea. The biggest challenges are her significant dementia and many cardiac and circulatory problems. Most recently she experienced a health decline from unexplained high fevers, bottomed out BP, resulting in delirium and psychosis, which are now controlled with Zyprexa. We're all surprised that she survived that episode, but she's a tough bird, so we're grateful to still have her with us for a while longer. The crux of the problem is that I haven't worked in 3 years so that I could keep her home with me. I won't subject her to the negligence and potential abuse that is so prevalent in many nursing homes (speaking from experience). The arrangement has worked fairly well, except that I am doing this alone (I'm 47, divorced, no children, but several pets), with minimal assitance from family members, as they all live in other cities. One sister visits every couple of months to help out for a day or two. The only respite I get is 4 hours a week through a state senior's program, and no financial assistance. The strain is taking a toll on my physical and emotional health, and surplus finances are now getting low, so I'm desperate for suggestions on what other respite resources might be available that I've not discovered. I need to go back to work at least part-time, just to meet extraneous expenses (auto repairs, home repairs, etc.) Keep in mind that a nursing home is not an option as long as I can safely care for her at home. My siblings are not financially supportive, as we have had some conflict about my resolve to keep our mother out of a nursing home, and some resentment that she invested so much money into my house for an apartment for herself. They have the delusional impressions that I simply do not want to work anymore(going back to work would be a vacation compared to caregiving!!) and that I will benefit financially more than they from the estate -- which is a ludricous thought, at best. Back to the subject ast hand....does anyone anywhere have any suggestions on where to find additional, low or no-cost respite care that will allow me to resume contributing to the household finances? Hiring private sitters is not feasible, as that would cost more than I would make, even at a fulltime job. It might help to know that we live in a relatively small town an hour away from a major city. That is complicating the problem. Moving is not an option, either; not only due to the expense involved and the fact that a change in locations would be unmanageably stressful for my mother, but because I also have an 87-year-old aunt (in relatively good health, but blind in one eye, and limited sight in her other) who has no other family and depends on me for many things. I won't abandon her and she is highly resistant to the idea of moving. The other side of the coin is that my aunt is our emergency sitter -- she helps when I have to leave the house for things like my medical appts. that fall on a day the respite aide isn't here. At 87, I don't ask her to sit very often or for very long. Sorry to sound so whiney! I'm really not, but I'm in a bit of a pickle I can't see a way out of. I would appreciate any insight, information, suggestions...anything and everything is welcome! Many thanks in advance, and God Bless all of you who commit yourselves to making the end of other's lives the best they can be!
Sponsor
SusanGene
07-31-2003, 07:54 PM
This is a terrible situation for you. You have my complete sympathy.
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
SusanGene
07-31-2003, 07:56 PM
This is a terrible situation for you. You have my complete sympathy.
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
Kre
08-02-2003, 01:41 PM
You are experiencing caregiver burnout. I have been there, done that and reaped poor health as a result. I took care of my m-i-l in my home until I almost went over the edge and was forced to seek alternative care for her. Although I had my husband around, he did not assume any responsibility for his mother's care, it was all up to me to take care of her and my large family. Only respite I had was when we had a person come in for 4 hrs. once a week to sit. I then would leave the house and go shopping. No I could not afford to buy things but in order to make shopping more pleasurable I decided to look for 2 plates, 2 cups/saucers at real cheap prices for a collection to use during retirement years. In other words it was my therapy.
Does your town have an "adult daycare"? If so, give that a try and then you go back to work. Some churches have senior programs for the elderly.
I gave my m-i-l the best of care but I ended up in very poor health as a result.
Does your town have an "adult daycare"? If so, give that a try and then you go back to work. Some churches have senior programs for the elderly.
I gave my m-i-l the best of care but I ended up in very poor health as a result.
jbj117
08-02-2003, 02:07 PM
SG, thank you for taking the time to reply to my post. I understand your intent and appreciate your iput. However, there are factors involved in my decision to not place my mother in a nursing home that extend beyond finances. Since I did not explain that in my previous post,it's understandable that you would assume it was primarily financially-based. My grandmother was institutionalized for almost 60 years with paranoid-schizophrenia, and my mother had to witness all those years of her mother's very unpleasant experiences in a variety of facilities. My mother's biggest fear in life is being instituionalized, especially since she has dementia and, most recently, medically controlled psychosis. Placing her in a nursing home would be signing her death sentence. Not only would she not survive long in such an environment, it would destroy what little security, comfort and peace she has in these last days of her life. I refuse to live with that on my conscience, regardless of the consequences, financial or otherwise. She deserves the same level of love that she gave her family. In addition, I strongly feel it is the responsibility of families to care for each other, as opposed to relegating that responsibilty to others, when at all possible. I do realize that it is not possible in every circumstance, but for us, it is. Turn the tables...suppose it were a case of a child with a disability for which others recommended institutionalizing so that the parents could continue leading a more "normal" life, so that it wouldn't be such an emotional or physical burden, or financial strain, on the family. I don't know about anyone else, but the idea would have been inconceivable to my parents, even if it had been a single-parent home. No, they would have pursued every other option possible to allow them to care for that child at home, as long as it was not a health or safety detrement to the child. That's all I'm doing. In my previous post, I did clarify that I would keep her home with me as long as I could "safely" do so. Yes, it is a financial strain. Yes, it is restrictive. Yes, it is stressful. Yes, stress can take a toll on one's health -- that's why I'm reaching out to others...to find ways to cope with the stress so that it doesn't do unreversible damage to my health, to ask for creative ideas for easing the financial strain, and for suggestions on cost-efficient respite care to lessen the restrictions. However, should we not find solutions to any of the above, we will continue in our present situation, making whatever adjustments are necessary -- including moving to a smaller home if it comes to that. So, although I'm grateful for your perspective and time, I will continue my stance of opposition to a nursing home for as long as is humanly possible. You were right to not wish me luck, since what we need are suggestions on how to support our decision, regardless of whether others agree with, or understand, it or not. We each have to do what we feel is right and best for ourselves and those we love. The same choices do not work for everyone, which is the beauty of freedom of choice. Again, thank you for the time you invested in your reply and for the suggestions you felt would be helpful. Many blessings to you and your family. JB
jbj117
08-02-2003, 02:31 PM
SG -- my apologies for not acknowledging your father's situation. I'm sure it was a very difficult decision for him to make and I'm very glad that it worked out so well for them both. Age does make a difference, doesn't it? If I were 20 years older, I wouldn't be able to provide adequate care, either, and would also have no other option.
KRE -- I'm sorry that you were given no help in caring for you MIL, and that your health was so negatively impacted. I hope it is improving, that you are back on the road to some sense of normalcy, and that you will be rewarded for your sacrifice. Are you still collecting your dishes? Our respite care is the same -- 4 hrs once a week. Not enough. We do have a senior center with daycare, but the cost would take 3/4 of any income I could earn in our small town. I just found out that there is a church here that has a *caregiver day-out* program 1/2 day a week, which will be a big help for respite care, but not enough to allow my returning to work.
I'm thinking of advertising for a "caregiver network" -- a respite co-op for other local caregivers, whereby we might exchange sitting time on a regular schedule so that some of us could at least return to work parttime. Of course it would only work for those who are caring for a mobile person, but it would only take a few people participating for it to make a big difference in our lives. It's worth a try, anyway.
Thank you for your suggestions, and bless you for your devotion to your MIL. I'm sure she is more grateful than you realize. I pray your family someday fully appreciates what you did for her. Remember..."what goes around, comes around". You will someday get back what you gave out of love.
JB
KRE -- I'm sorry that you were given no help in caring for you MIL, and that your health was so negatively impacted. I hope it is improving, that you are back on the road to some sense of normalcy, and that you will be rewarded for your sacrifice. Are you still collecting your dishes? Our respite care is the same -- 4 hrs once a week. Not enough. We do have a senior center with daycare, but the cost would take 3/4 of any income I could earn in our small town. I just found out that there is a church here that has a *caregiver day-out* program 1/2 day a week, which will be a big help for respite care, but not enough to allow my returning to work.
I'm thinking of advertising for a "caregiver network" -- a respite co-op for other local caregivers, whereby we might exchange sitting time on a regular schedule so that some of us could at least return to work parttime. Of course it would only work for those who are caring for a mobile person, but it would only take a few people participating for it to make a big difference in our lives. It's worth a try, anyway.
Thank you for your suggestions, and bless you for your devotion to your MIL. I'm sure she is more grateful than you realize. I pray your family someday fully appreciates what you did for her. Remember..."what goes around, comes around". You will someday get back what you gave out of love.
JB
Kre
08-03-2003, 04:42 PM
Your idea of a "caregiver network" sounds like a good idea. However, keep in mind how it will impact the elderly who will be shuffled from house to house.
Finding someone to come in and be "company" for the elderly is also a good idea. I found a little elderly lady, crippled from polio but still going strong to come and visit my m-i-l once a week. I prepared lunch for them and then they had time to visit. I would go pick the lady up and then return her to her home.
Sometimes churches have a program for visiting the elderly. Perhaps you might find some volunteers to come in on regular basis to visit your mother. Thru this type organization you might find someone who would be interested in being a sitter for a small fee.
Finding someone to come in and be "company" for the elderly is also a good idea. I found a little elderly lady, crippled from polio but still going strong to come and visit my m-i-l once a week. I prepared lunch for them and then they had time to visit. I would go pick the lady up and then return her to her home.
Sometimes churches have a program for visiting the elderly. Perhaps you might find some volunteers to come in on regular basis to visit your mother. Thru this type organization you might find someone who would be interested in being a sitter for a small fee.
Jenetti
08-04-2003, 05:24 PM
oh wow sweetie, does sound like burnout. We all go thru that at some point or another. I think I'm heading there as well. Both my parents are not in good health, then again, neither am I. I have fibro, had to stop working cause of my spine. My doc wants to send me to pain management for my spine, says its extremely bad and i need stronger meds to help with the pain and shots directly into the spine. I cant go right now, WHY?
1) mom had a heart cath done last week and I had take her to it, and be with her for a few days afterwards.
2) on friday she had a severe attack of divertuculitis, (spelled wrong i know lol), doc wanted her in hospital, mom refused so they gave her cipro, I do all the running around to pharmacies. She calls me like 10 times a day.
3) shes in the beginning stage of alzheimers, so forgets when to take her meds
4) she has osteoporosis and is always falling down
5) she had a home care service come see her today i had to be there , took 2 hours
6) had to run to hospital pick up her xrays, and the contrast drink shes suppose to take for tomorrow
7) she has a cat scan to be done tomorrow at 8:30
8) Dad has an appt on Wed for his hearing
9) mom has her check up for diverticulitis on Friday, to see if antibiotics took care of it,
7) has another stress test on the 26th,
I take care of all her bills, financial papers, doctor appts, you NAME IT.
Thats JUST in the last two weeks
prior to that all the running around for her stress test prior to the heart cath and numerous doc appts to find out what they were going to do,
I AM soooooooooooo TIRED hon . Guess I dont have any suggestions other than, remember they took care of us when we needed them and try to rest as much as you can WHEN you can. Not great suggestions I know, but i guess i needed to vent a bit .
Jen
1) mom had a heart cath done last week and I had take her to it, and be with her for a few days afterwards.
2) on friday she had a severe attack of divertuculitis, (spelled wrong i know lol), doc wanted her in hospital, mom refused so they gave her cipro, I do all the running around to pharmacies. She calls me like 10 times a day.
3) shes in the beginning stage of alzheimers, so forgets when to take her meds
4) she has osteoporosis and is always falling down
5) she had a home care service come see her today i had to be there , took 2 hours
6) had to run to hospital pick up her xrays, and the contrast drink shes suppose to take for tomorrow
7) she has a cat scan to be done tomorrow at 8:30
8) Dad has an appt on Wed for his hearing
9) mom has her check up for diverticulitis on Friday, to see if antibiotics took care of it,
7) has another stress test on the 26th,
I take care of all her bills, financial papers, doctor appts, you NAME IT.
Thats JUST in the last two weeks
prior to that all the running around for her stress test prior to the heart cath and numerous doc appts to find out what they were going to do,
I AM soooooooooooo TIRED hon . Guess I dont have any suggestions other than, remember they took care of us when we needed them and try to rest as much as you can WHEN you can. Not great suggestions I know, but i guess i needed to vent a bit .
Jen
SusanGene
08-07-2003, 09:04 PM
For everyone on this board I will be first to bring up what separates the men from the boys: diapers; incontinence.
It's one thing to give our days and nights to a parents' care. It is an entirely different matter if they wear diapers and have to be changed often. Few children would do it; nurses' aides will. If not for the fact they have to be turned over , etc which takes a lot of strength. Add to that problem
Alzheimer's Disease and I wonder if they really are
perfectly sure Where they are?? Many parents would not consider having their child doing all this work. A grown up is different from a baby. Much heavier.
You can't compare the two. I waited on my parents on a daily basis (even though they were both in a nursing home that looked like a posh hotel)and I guess you think dad was grateful? Anything but. I drove to that place each and every day bringing them a list of things and he was just terrible to me. I'd get out of my car in a 100 degree parking lot with groceries falling on the ground. And all I got from him was criticism. But I kept it up : driving him to doctor's appointments, surgeries he loved having since they got him out of the home, paid all his bills, talked to his insurance company constantly,
and ordered him a Little Rascal wheelchair. When I told him it was yellow he called the place up and yelled at them, "CANCEL!" and slammed the phone down.
Two years of total abuse. And while he was telling me to "shut up" he wanted to come live with us??? Oh, right. He tore that place apart ! He tried to change the rules! We moved out of town , taking him with us and put him elsewhere.
I'm happy you guys have such sweet, grateful parents. That would have made it more bearable for me. Mom was sweet , though.
It's one thing to give our days and nights to a parents' care. It is an entirely different matter if they wear diapers and have to be changed often. Few children would do it; nurses' aides will. If not for the fact they have to be turned over , etc which takes a lot of strength. Add to that problem
Alzheimer's Disease and I wonder if they really are
perfectly sure Where they are?? Many parents would not consider having their child doing all this work. A grown up is different from a baby. Much heavier.
You can't compare the two. I waited on my parents on a daily basis (even though they were both in a nursing home that looked like a posh hotel)and I guess you think dad was grateful? Anything but. I drove to that place each and every day bringing them a list of things and he was just terrible to me. I'd get out of my car in a 100 degree parking lot with groceries falling on the ground. And all I got from him was criticism. But I kept it up : driving him to doctor's appointments, surgeries he loved having since they got him out of the home, paid all his bills, talked to his insurance company constantly,
and ordered him a Little Rascal wheelchair. When I told him it was yellow he called the place up and yelled at them, "CANCEL!" and slammed the phone down.
Two years of total abuse. And while he was telling me to "shut up" he wanted to come live with us??? Oh, right. He tore that place apart ! He tried to change the rules! We moved out of town , taking him with us and put him elsewhere.
I'm happy you guys have such sweet, grateful parents. That would have made it more bearable for me. Mom was sweet , though.
Kimianne
10-03-2003, 05:24 PM
Originally posted by Wind@water:
Hi all!
As a real estate broker I can tell you that your siblings have reason to be resentful. By converting the basement, you made an addtional- at the minimum- $20,000. by converting the basement.
I have to ask. What!?! She is taking care of her mother for 10 years. 20K is not that much and certainly not enough "wages" for the work she is doing.
I am sorry and no disrespect intended but that statment is ludicrous. How can any sibling be resentful of that?
jbj117 Welcome to the boards :wave:
I hope all works out for you.
Take care. And God bless you.
------------------
Kimi
Life is a gift. Your loved ones are the benefits.
Respect them both and you will reap the rewards.
Hi all!
As a real estate broker I can tell you that your siblings have reason to be resentful. By converting the basement, you made an addtional- at the minimum- $20,000. by converting the basement.
I have to ask. What!?! She is taking care of her mother for 10 years. 20K is not that much and certainly not enough "wages" for the work she is doing.
I am sorry and no disrespect intended but that statment is ludicrous. How can any sibling be resentful of that?
jbj117 Welcome to the boards :wave:
I hope all works out for you.
Take care. And God bless you.
------------------
Kimi
Life is a gift. Your loved ones are the benefits.
Respect them both and you will reap the rewards.
Kimianne
10-03-2003, 05:25 PM
Sorry double post.
[This message has been edited by Kimianne (edited 10-03-2003).]
[This message has been edited by Kimianne (edited 10-03-2003).]
bella67
12-13-2003, 10:11 PM
Hi,
I am a CNA and a mother of a disabled child. I can no longer work because my son needs total care. I relate to your problems because I too would love to go back to work (vacation as you say to doing it 24/7), but I don't have a car nor do I trust anyone else to care for my son. He's severely autistic, non-verbal and has violent episodes throughout the day. I have been trained to work with the elderly and even took a course on alzheimers. Honestly, being on both sides of the window, working in a health care facility and taking care of a loved one at home... I have to agree with your reservations. I would have many problems at work because I'd argue the standard of care given to these patients. Some nites I would have a 30 patient care load , mostly due to the nursing shortage. I did feel burnt out but then again I was leaving one stressful enviroment and entering another. My husband doesn't help me at all and I also have a 7 yr old boy with asperger's syndrome. My husband also has asperger's as well as bipolar disorder. Some nites this house is total chaos and I want to just run away!! However, each day is a new day and even though I'm currently having serious medical problems myself, I just can't cope with putting my son in an institution or group home. There is no such thing as individual care in a hospital or long term care type facility. I have been on a 3 yr waiting list for respite and I have little if no free time , except for when they are in bed sleeping. It does take it's toll and I wish I had some advice for you. I wish I had some advice for ME.. lol Sometimes just relating is a big help. I also feel that some of us are just born to be caregivers.. it's in our blood!! That doesn't mean that we don't get tired, we don't get sick, we don't get frustrated. You need some form of an outlet and I'm talking beyond 4 hrs of respite care or sadly enough you'll end up being in the same boat as your mother. I suggest calling the hospital where your mother gets medical care and asking for social sevices, explain your situation and see if they have any programs you might be eligible for. You could also try and find support groups for children of disabled parents. Whatever it takes to keep you sane and functioning is my thoughts. If you buy a car and you don't replenish it with oil, have the brakes checked, take it in for maintenance, eventually that car will break down and no longer function. A human being is much more complex and worthy of maintenance and care, please try and find some help for yourself before you have nothing left to give. Believe me, your mother will know the difference if you are doing things out of duty or doing things because you want to do it.
Take care and keep in touch,
Bella
Sorry double post.
[This message has been edited by Kimianne (edited 10-03-2003).]
I am a CNA and a mother of a disabled child. I can no longer work because my son needs total care. I relate to your problems because I too would love to go back to work (vacation as you say to doing it 24/7), but I don't have a car nor do I trust anyone else to care for my son. He's severely autistic, non-verbal and has violent episodes throughout the day. I have been trained to work with the elderly and even took a course on alzheimers. Honestly, being on both sides of the window, working in a health care facility and taking care of a loved one at home... I have to agree with your reservations. I would have many problems at work because I'd argue the standard of care given to these patients. Some nites I would have a 30 patient care load , mostly due to the nursing shortage. I did feel burnt out but then again I was leaving one stressful enviroment and entering another. My husband doesn't help me at all and I also have a 7 yr old boy with asperger's syndrome. My husband also has asperger's as well as bipolar disorder. Some nites this house is total chaos and I want to just run away!! However, each day is a new day and even though I'm currently having serious medical problems myself, I just can't cope with putting my son in an institution or group home. There is no such thing as individual care in a hospital or long term care type facility. I have been on a 3 yr waiting list for respite and I have little if no free time , except for when they are in bed sleeping. It does take it's toll and I wish I had some advice for you. I wish I had some advice for ME.. lol Sometimes just relating is a big help. I also feel that some of us are just born to be caregivers.. it's in our blood!! That doesn't mean that we don't get tired, we don't get sick, we don't get frustrated. You need some form of an outlet and I'm talking beyond 4 hrs of respite care or sadly enough you'll end up being in the same boat as your mother. I suggest calling the hospital where your mother gets medical care and asking for social sevices, explain your situation and see if they have any programs you might be eligible for. You could also try and find support groups for children of disabled parents. Whatever it takes to keep you sane and functioning is my thoughts. If you buy a car and you don't replenish it with oil, have the brakes checked, take it in for maintenance, eventually that car will break down and no longer function. A human being is much more complex and worthy of maintenance and care, please try and find some help for yourself before you have nothing left to give. Believe me, your mother will know the difference if you are doing things out of duty or doing things because you want to do it.
Take care and keep in touch,
Bella
Sorry double post.
[This message has been edited by Kimianne (edited 10-03-2003).]
Willow3
01-11-2004, 06:53 PM
JBJ, I am 65 and am taking care of my mother who will be 94 next month...Mother came to me after having been in the hospital for a form of dementia which for the most part seems to be under contro;. She is taking 2.5 of Zeprexa and 3mg of nuerontin, a mood elevator. This seems to be working fine. I, too, live alone and have only done this for 3 months. It is stressful at times...the hiding and rearranging of things.
I am able to leave my mother during the day for an hour. I turn off the stove in the basement at the switch, unplug the Microwave, and I lock the dead bolt when I leave. I will not leave her at night...When I have things to do at night my brother or a friend comes over to sit with her. He lives 35 miles away, but comes twice a month so I can go play bridge....mother doesn't want anyone else :( I also have a cleaning lady who comes to clean...she is hear six hours and I pay her with mother's money..This is a day that I am free to "run" with my friends.
Would there be any teenager who could sit with your mother so you can get out? Just a few suggestions...wish you the best
I am able to leave my mother during the day for an hour. I turn off the stove in the basement at the switch, unplug the Microwave, and I lock the dead bolt when I leave. I will not leave her at night...When I have things to do at night my brother or a friend comes over to sit with her. He lives 35 miles away, but comes twice a month so I can go play bridge....mother doesn't want anyone else :( I also have a cleaning lady who comes to clean...she is hear six hours and I pay her with mother's money..This is a day that I am free to "run" with my friends.
Would there be any teenager who could sit with your mother so you can get out? Just a few suggestions...wish you the best
jane bigham
04-05-2004, 04:27 PM
I have been the caregiver for my parents for seven years now. It has been a blessing to have them with my family, but also very stressful at times! I don't think anyone realizes the amount of things that have to be given up when you have a parent in your home that needs 24 hour care. We are unable to attend church, go out in the evenings, and seldom are free to attend family gatherings. We have few friends that have stuck with us during this time. Our three children have been great help, but now two are married and out of our home, so again, my husband and I are left to do the care on our own! We have a wonderful caregiver that comes 24 hours a week and she has been with us for over six years now and is a blessing to our entire family! She will always be considered a member of our family and I tell her daily, that she is what has kept me sane over the past seven years.
We do have a bath aide that comes twice a week on the days that the caregiver doesn't come. I was reading that people were asking for advice on getting help- we haven't come up with much help either. It is our choice to have kept my parents out of a nursing home, and we will stand by that decision, but it is hard to understand how the government will pay thousands of dollars to keep elderly in nursing homes, but don't give families any help who are keeping their parents in their homes. We have saved the government thousands of dollars, and yet we get no help other than the bath aide and a visiting nurse comes to do blood work and change Mom's catheter. The bath aide is here for about an hour a week-- not much help!
I feel like I could write a book with all the things we have faced in the past seven years! Mom was in a nursing home for rehab after a massive stroke, and we made the decision then that she would never go back! When we told the Dr of the nursing home that we wanted to bring mom home, she said it was a nice THOUGHT, but that she didn't think we could do it! That was seven years ago. Only Mom is with us now, Dad passed away last December. I am thankful for every day that I have her with us and I in many ways it has brought our family together. Our kids have seen and understood the sacrifice, but I don't think anyone else would understand unless they are in the same situation!
Anyway-- it helped to write. Some days I do get sad, but I know we are doing what we are supposed to be doing and will remain happy with our decision! THanks for listening! Jane
We do have a bath aide that comes twice a week on the days that the caregiver doesn't come. I was reading that people were asking for advice on getting help- we haven't come up with much help either. It is our choice to have kept my parents out of a nursing home, and we will stand by that decision, but it is hard to understand how the government will pay thousands of dollars to keep elderly in nursing homes, but don't give families any help who are keeping their parents in their homes. We have saved the government thousands of dollars, and yet we get no help other than the bath aide and a visiting nurse comes to do blood work and change Mom's catheter. The bath aide is here for about an hour a week-- not much help!
I feel like I could write a book with all the things we have faced in the past seven years! Mom was in a nursing home for rehab after a massive stroke, and we made the decision then that she would never go back! When we told the Dr of the nursing home that we wanted to bring mom home, she said it was a nice THOUGHT, but that she didn't think we could do it! That was seven years ago. Only Mom is with us now, Dad passed away last December. I am thankful for every day that I have her with us and I in many ways it has brought our family together. Our kids have seen and understood the sacrifice, but I don't think anyone else would understand unless they are in the same situation!
Anyway-- it helped to write. Some days I do get sad, but I know we are doing what we are supposed to be doing and will remain happy with our decision! THanks for listening! Jane
rosie53
04-12-2004, 02:55 PM
Hi, I read your post and can identify with the feelings. My parents sold their home and moved in with us 2 years ago, contributing to the building of an apt for them. We have a VNA (Visiting Nurse) come in 3 times a week (covered by medicare) to bathe my mother and help her in any way, take vitals etc. She only stays about an hour on those days but it allows my father to get to the store (he is in good health and 87 and my mother is 77 and dying from Pulmonary Fibrosis). Both my husband and I work full-time and we have a 15 yr old daughter. I can see things going downhill lately...my father leaving burners on and saying things that don't make sense. So I know that I will have to be home more soon and the finances are tight with the added expense of having them there.
I would suggest that you look into any Visiting Nurse Associations in your area and yes, someone else suggested that you check out the church of your choice, and definitely the local Senior Center. They often have volunteers that will come stay with your mother for and hour or two.
We all make choices and they are ours to make. Noone should judge your choice. We all do the best we can with what we've got. And even if you only have an hour after she is in bed, relax, take a bath, watch a show, put your feet up, call a friend, and be good to yourself, then hit the sack, and be grateful you are able to be there for another day.
Take Care!
I would suggest that you look into any Visiting Nurse Associations in your area and yes, someone else suggested that you check out the church of your choice, and definitely the local Senior Center. They often have volunteers that will come stay with your mother for and hour or two.
We all make choices and they are ours to make. Noone should judge your choice. We all do the best we can with what we've got. And even if you only have an hour after she is in bed, relax, take a bath, watch a show, put your feet up, call a friend, and be good to yourself, then hit the sack, and be grateful you are able to be there for another day.
Take Care!
lovemyman
05-02-2004, 03:59 AM
I am with you on not placing anyone in a Nursing Home. My husband had a stroke and we were sent to the VA Nursing Home/Rehab, under the assumption that he was going to rehab. It was a lie. Anyway, I lived there with him ( I slept on the floor on an air mattress beside his bed for a year and a half) and I know how horrible patients are treated. And this was supposed to be a "nice" "clean" Nursing Home. I wouldn't wish it on a mangy animal.
I took my husband home as soon as I could get him released, (that's another story) and now he is getting outpatient therapy. I still need to be there when he gets the therapy because I assist most times but I can run errands if I need to. His therapy OT, PT, and Speech is 3 times a week for 2 to 3 hours. So far I haven't left him for more than 1 hour and that was something I had to do at the hospital where he has the therapy but I hope to be able to take some time as soon as I feel he is comfortable and am certain they will call me if he needs me.
I know I am over-protective but you would not believe the crap that has happened in the last year and the poor care my dear husband recieved at the VA and all of this with me there fighting the fight for him.
Anyway, I understand you competely and also know the stress that you are under, I just wish my dear darling could walk and talk and do a few things for himself. I would love to see him have some of his independence back!
I took my husband home as soon as I could get him released, (that's another story) and now he is getting outpatient therapy. I still need to be there when he gets the therapy because I assist most times but I can run errands if I need to. His therapy OT, PT, and Speech is 3 times a week for 2 to 3 hours. So far I haven't left him for more than 1 hour and that was something I had to do at the hospital where he has the therapy but I hope to be able to take some time as soon as I feel he is comfortable and am certain they will call me if he needs me.
I know I am over-protective but you would not believe the crap that has happened in the last year and the poor care my dear husband recieved at the VA and all of this with me there fighting the fight for him.
Anyway, I understand you competely and also know the stress that you are under, I just wish my dear darling could walk and talk and do a few things for himself. I would love to see him have some of his independence back!
kay77449
05-05-2004, 01:19 AM
:wave: Sorry to hear that you are having a ruff time right now Have been on both ends and know what it is like to take care of family members and I also am a Certified Nurse Assistance and have done hospital and nursing home retirement as well as home health care. Not sure what insurance your love one has and dose hse have medicare or AArp I know that AARP picks up a lot of coverage that other insurance dose not pick up you may want to look in to it because I think that they would cover some one coming in a couple of days a week or even Monday thru Friday to have a Nurse assistance and sitter a sitter would do just that and dose not usually handle any of the medical needs the nurse assistance can assist with medical needs and medication daily care and showers.I know that it can be stressfull on both ends if you would like to chat more about this just drop me a line. Everone needs a
break.
Kay
break.
Kay