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I think I may have written aboyt the "Thanksgiving Table Rule" before, but I believe it is worth repeating. During my mother's decline both my pastor and my lawyer suggested that I consider who I wil ...Read More

I think I may have written aboyt the "Thanksgiving Table Rule" before, but I believe it is worth repeating. During my mother's decline both my pastor and my lawyer suggested that I consider who I will want with me at the important occasions in my life, after my mother leaves this earth.
They make a good point. It has helped me as we planned mom's services and as I now work on her estate. Some things aren't worth the risk of ripping a family apart.
One more burden for caregivers could be maintaining relationships within the family. But this is one caretaking job that everyone, who actually cares, can work on - no matter how far away they are or how little money they have, or how busy they are. Tell them they need to help you with the 'Thanksgiving Table Rule."

I was very fortunate to find ONE docter during my mother's ten year decline, that actually advocated for her. The rest just felt "she's old and she's sick. What do you expect me to do?"
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I was very fortunate to find ONE docter during my mother's ten year decline, that actually advocated for her. The rest just felt "she's old and she's sick. What do you expect me to do?"

During her recent hospitalization, I filed a formal complaint against one doctor who said, in front of her, " She's too old and too sick. We wouldn't treat her anyway."

My message to every health care worker out there is "I hope you are treated just as you treated my mother, when you are sick and elderly." To the good ones it's a compliment. To the rest - I hope it will continously run through their minds, when they do become ill or require treatment for anything.

I also want to remind them:
If old age is a fatal illness remember that you already have been diagnosed with it, even though it may be in it's earliest stages.

Hey docs! We get it - certain illnesses are more likely to acompany old age. That doesn't mean the person is untreatable. It just means that you are unrealistic about the prognosis and are projecting your feelings of inadequacy on those of us who want the best possible outcome for our loved ones.

I am angry that so many people are more helpful if you want to make all the problems of caring for the patient to go away. There is far too little help and support for those who truly are caregivers.

I hope you will use this forum to gain support, adivice and encouragement. The world needs more people who care the way you do.

anne123 Amen!
I have found that those who are not dealing with the day to day care of a loved one, for whatever reason, are the quickest to critize.
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anne123 Amen!
I have found that those who are not dealing with the day to day care of a loved one, for whatever reason, are the quickest to critize.
Some people actually think they are being helpful by pointing out what you are doing "wrong". They have no idea what they are talking about until they have walked in your shoes (or in your slippers through pee-lol)

My response to them is "Would you please SHOW me how that is a better way to do this?" They seem to take a few steps back after that - at least for a while...

I have a few family members who kept telling me I shouldn't be "giving up my life" to take care of mom. Their solution to everything was "put her in a nursing home." I know there are times when that is the best thing a family can do. I did not feel we were at that point with my mom.I feel kind of sorry for them because they will never know the comfort and peace that comes from hands-on involvment in your loved one's care. Some of my closest and most meaningful interactions with my mother are from moments when we shared a laugh or a tear while I was helping her.
No, it is not easy and you do, in a sense "give up your life" for a while, but knowing the peace of mind that comes when they are gone, I would never have done it any differently.

Dear Susan,
A terrible person would never have stepped up to help your mother in the first place. You are a hero!

Whatever happens -- You can only do so much. My mother was supposed ...Read More

Dear Susan,
A terrible person would never have stepped up to help your mother in the first place. You are a hero!

Whatever happens -- You can only do so much. My mother was supposed to spend her time face down after surgerey to reattach her retina. We got a special bed so she could do just that. She spent most of her time doing anything but staying face down. As a result she lost the sight in that eye. I would get so angry, because she acted as if she wanted to be blind. She was like a small child who simply won't do what they are supposed to do.

Mentally she was clear. She knew what she was doing and, for whatever reason no one could convince her she was doing herself harm. After the first few days, when I relized she was making a concious choice, I stopped punishing myself for "allowing" it to happen. Her immediate comfort was more important to her, than getting the sight back in her eye.
(I also have to add that the restrictions required to make some treatments successful, tell me that they need to find other ways to treat such problems. Most human beings would find it difficult to be 100% compliant. I can't imagine the surgeon who treated mom being able to do what he was asking of her!)
It is a horrible strain to see your loved one going downhill and knowing that there is little you can do to stop it. It's even worse to watch them stop trying.

We burried my mom two weeks ago. As I look back, I can't even remember when I started becoming her caretaker, not just her daughter.I am very much at peace knowing I did what I could to take care of her. There were many times when I wanted to just run away. There were a few times when I left for a week or so and let my sister take care of her, by herself. It did me a lot of good to recharge. It was actually very rewarding to come home and start in, doing most of it again, when mom would tell me she missed 'my touch."

If you can, (I know it's difficult) think about what you need to know when your mother is gone. If you have already passed your expexctations for yourself, it is time to let go a little and make other arrangements for her care. You will find the peace you have earned.

Any child who takes care of a parent is doing THE most challenging job on earth. It's a real roller coaster ride...

In my experience, my family has been asked to list, on a special form, the names of those who can receive medical information about the patient. Ideally the patient should be the one who decides who ...Read More

In my experience, my family has been asked to list, on a special form, the names of those who can receive medical information about the patient. Ideally the patient should be the one who decides who goes on that list. I was my mom's medical POA and always listed my all my siblings.

For Caregivers who may run into this in the future, I would suggest making a list identifying those the patient (or their representative, in the best interest of the patient) would want to know about the patient's medical condition. This list, though not a legal document, could help the person with POA, eliminate any disagreements that might come up, when everyone is more emotional. This list should be kept with the Living Will or incorporated into the LW itself -- when it is drawn up.

THE MORE YOU KNOW ABOUT THE PATIENT'S WISHES, THE BETTER. It helps when they are sick and helps bring the caregiver peace after the patient is gone.

195Austin,

I am sorry to hear that you went through that with your husband. Stopping life support is a difficult decision to have to make.
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195Austin,

I am sorry to hear that you went through that with your husband. Stopping life support is a difficult decision to have to make.

You have a very good point, life support can be withdrawn at any time. I don't know why this doc told me in his story that he just went through this with his aunt. He, of all people, would have known he could discontinue life support and did not have to "suffer" being by her bedside for 6 months -- unless someone else had the POA and fought him on it.

I have a copy of my mother's living will and I am her medical POA,
She basically states in her LW she would want to be DNR. Occasionally she says things to me that indicate she has changed her mind about the issues. I feel obligated, at the very least, talk to her nurse (she is currently hospitalized) about what she has told me. That is what I was doing when this doctor decided I should have his opinion. At the time he was not involved in my mother's care, so it was just another opinion.

When I found out he was called in as a consult, I waited to see what he said when he saw my mother. He felt no need to treat her, because she is old. His opinion is obvious in the way he treats his patients.

I am considering calling the patient representative or the nursing supervisor or the administrator and telling them that he chooses the code status he believes is right for the patient and treats them accordingly. II simply is not his decision.

I feel that they pressure you to make these decisions long before you have all the facts. Who can know what lies ahead? My mom even asked me why I wanted to know now about CPR and intubation. She said "I won't know until the time comes."

I am learning to be very careful to watch for signs of prejudice against the elderly, in my mother's providers. There are definitely two opposing camps. I want my mother treated by those who respect and care about the elderly.

Hi Jacquels714,
I have done a lot of battles with nursing home/rehab recently. I found it helpful to read over the papers or booklets that were given to the patient upon admission. I have disco ...Read More

Hi Jacquels714,
I have done a lot of battles with nursing home/rehab recently. I found it helpful to read over the papers or booklets that were given to the patient upon admission. I have discovered that there is usually a statement in those papers about their policy for transferring patients.

I am not sure what issue needs to be resolved, but transferring the patient and not addressing the issues guarantees that those same issue will come up for other patients, there. (unless the issues are are related to treatment of a certain condition.)

You haven't indicated how this involves you, so I don't know what role you could take in changing things.

In New Jersey, patients must receive an explanation of the reasons for transferring you to another facility, and information about alternatives to the transfer.

I have found many of the people in nursing homes ready with a "scripted" answer, designed to make you think something is being done about the problem, when it isn't. They also have an uncanny way of making the problem your fault, as if they have nothing to do with it.

I believe that nursing homes are fighting to keep every penny they can. They could become an endangered species as more Medicaid money is now being spent on home care. I have been told I am too cynical, but if you look into the finances behind the transfer you'd find that, in some way, it's about the money.

I hope this helps a little.

Mom's urine is tea colored. The urologist said "It's sediment from the bladder." I tried to get him to be more specific by asking " Blood? Infection?"
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Mom's urine is tea colored. The urologist said "It's sediment from the bladder." I tried to get him to be more specific by asking " Blood? Infection?"
He said "Maybe, but we wouldn't do anything about it anyway."
When I asked why not, he replied "Because of her age and condition."

Two days ago, before he consulted by my mom's doctor, he butted in on a conversation I was having with mom's nurse about her code status. He let me know in no uncertain terms, that he felt patients her age (86) should not be treated as a full code. He went on about how hard it is on the family if a patient ends up in a vegetative state on a ventilator.
I asked him if it was worse than standing by the bedside, watching them die, while no one did anything. He said, for him it was. So I know he has a "do nothing" attitude toward older patients.
I hope I get to tell him what I like to tell everyone taking care of mom -- "I hope you get the kind of care you gave my mother, when you become ill."
Mom's urine bag was emptied. The fresh urine is now a much lighter color. Maybe there was nothing to be done about it.
Her attending came in and was not concerned as long as her urine is not dark and she has no fever.
As for the urologist, he has a reputation for being arrogant and insensitive. If he's in my mother's room or see him in the hall I will certainly begin a discussion about it with him.

My mother began eating only soft foods and started coughing more and more. She lost a great of weight and now is on tube feeding because she was so severely malnourished. She has significant swallowi ...Read More

My mother began eating only soft foods and started coughing more and more. She lost a great of weight and now is on tube feeding because she was so severely malnourished. She has significant swallowing difficulties, probably as a result of a previous stroke.

Have swallowing tests done. Speech therapists can do special evaluations and can provide exercises and other types of help for problems swallowing.

Oddly enough it's thin liquids that can cause the most problems. They can start down the throat before the swallowing mechanism protects the wind pipe, causing choking. Any food or even normal secretions, can get into the lungs this way and cause aspiration pneumonia. ( My Mom is fighting off her second round of aspiration pneumonia.)

Foods can be thickened with commercial food thickeners or by tricks like adding instant mashed potatoes to soup. This helps prevent aspiration.

I recommend searching the terms, "dysphagia" - difficulty swallowing and "mechanical soft diet" to learn about helpful dietary changes.

Lilliput, my uncle had Zenker's diverticulum, which creates a pouch in the swallowing tube which can cause problems like difficulty swallowing and regurgitation of food. I think you could learn a lot about your mother's problem by having the barium study or other tests to identify the problem.

I hope you both can take action to prevent the malnutrition that has weakened my mother so much. It's a long slow process to get any reasonable amount of strength back and increases their vulnerability to all sorts of problems. Good luck

Dr. Laura Mosqueda, from the university of California at Irvine wrote to Dear Abby. The column was in the June 15, 2010 paper.

She wrote:" On this day, communities all over the world will s ...Read More

Dr. Laura Mosqueda, from the university of California at Irvine wrote to Dear Abby. The column was in the June 15, 2010 paper.

She wrote:" On this day, communities all over the world will sponsor events to shed light on the growing and tragic issue of elder abuse." The article went on to describe the problem. The website for more information is www.centeronelderabuse.org.

To all of you who have to worry about a loved one who is in danger of aspirating, I can only wish you the best. It is so hard to watch them as they cough and choke. I rember saying to one doctor," I d ...Read More

To all of you who have to worry about a loved one who is in danger of aspirating, I can only wish you the best. It is so hard to watch them as they cough and choke. I rember saying to one doctor," I don't want to kill my mother just by giving her some food." . He dismissed my comment, but I would like to know if that is how the some of the rest of you feel?

My mom has had two types of swallowing tests, done by speech therapists, about 2 months apart. They both show that as soon as she puts food in her mouth the thinnest liquids start down her throat. She is not even aware of it.

The second speech therapist worked with mom several times a day, doing mouth, throat and face exercise as well as experimenting with differnt types of food and a mechanical stimulation device. She reported a tiny improvement, but mom still has to have thickened liquids and purred foods.She gaves us three pages of exercises that she reccomends we continue doing with her.

I suggest that anyone dealing with this issue search the internet for "soft mechanical diet." There are different thicknesses of foods that can be tried. I am most familiar with "nectar thick and honey thick. They are just what they sound like -- honey thick slowly drips from the spoon just as honey would. There are even specially prepared foods available that have already been thickened. These were recomended to me because they are always have the same consistancy.

I have been told that good mouth hygeine is necessary before and after eating/ feeding. Studies have shown that if a person's mouth is cleaned out with mouthwash, prior to eating, fewer harmful germs are forced into the lungs, if aspiration occurs. A non alcohol type of mouthwash is reccommended to keep from drying out the tissues of the mouth.

When mom is done eating it is necessary to clean out her mouth, especially between the teeth and the cheek, where food is "pocketed". Small particles remaing in the mouth can easily be aspirated later.

I hope some of the info I've shared is helpful.

As others have said, talk to your dad if he is able to respond. It truly is his choice.

As I sit here next to my mother, in her hospital room, I think I might understand your mother's think ...Read More

As others have said, talk to your dad if he is able to respond. It truly is his choice.

As I sit here next to my mother, in her hospital room, I think I might understand your mother's thinking, a little. My mom came here vomiting blood and docs only found a small ulcer. She has been getting meds for that. Now she seems on the verge of pneumonia, with a great deal of chest congestion.

She cannot swallow correctly and is at constant risk for aspiration. She has a feeding tube, but only seems to be getting weaker, in spite of better nutrition. Her body seems ready to give out. With the arthritis that is crippling her along with right sided weakness from previous strokes, I wonder sometimes if we should "just let her go."

I would not be able to live with myself, if, for instance, I as her medical POA, stopped further treatment if she does progress into pneumonia. I want to comply with her wishes as stated in her living will, but this is not covered. Yet at times she looks at me and says "I shouldn't still be here"' so I feel torn.

I do not trust the local hospice program since they seem to be into euthanasia. I believe that some people that work for them feel empowered to take a life, when they don't see the quality of life they think the patient should have.

In a least one case, they gave a woman a "pain" shot even though she said she didn't need it. On the way out the door, the hospice worker told the family, "if she is not dead in a couple of hours,give me a call." She died within the next two hours. My pastor tells me he has seen this happen in many cases. This is murder.

I know not all hospice personal do these things and am happy to report a second hospice has opened in the area. They do what they can for the patient without interfering with God's plan.

So, feeling torn by my mother's decreasing quality of life, I can understand how a hospice worker could convince your mom to "let go" and not help your dad with the pneumonia. I cannot understand how your mother could cope with her choice, later, when she is alone and no hospice person is influencing her behavior.

I hope, by now, your dad has had proper treatment and you can rest easy, knowing that dad is being cared for.

In the meantime, I will keep watch, by my mother's bed and pray that God's Will, whatever that may be, is done.

To have my mother out of that place is such a relief. Her home care will be demanding, but as sylvester18 said nobody can take care of a parent better than loved ones.
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To have my mother out of that place is such a relief. Her home care will be demanding, but as sylvester18 said nobody can take care of a parent better than loved ones.

I wish there was a way to put this kind of place out of business. I think the thing that bothers me most is the way they can provide the worst of treatment -- even kill people -- and Medicare, Medicaid and other insurance companies pay them the same amount of money a truly top notch facility gets.

Any time you hear the words "I thought you knew..." or its just a matter of semantics..." and my personal favorite -- "you don't understand the medical definition of the words we use..." Get your loved on away from there ASAP.

I agree with the other comments, but I wish to pass along a bit a of advice given to me by both my minister and my lawyer: As you decide what is best for your mother it is also important to think abo ...Read More

I agree with the other comments, but I wish to pass along a bit a of advice given to me by both my minister and my lawyer: As you decide what is best for your mother it is also important to think about the "Thanksgiving Table Issue." Your relationship with your brother will continue, good or bad, following your mother's passing. It is important to think about how your present actions will impact family interactions later on so you can work toward what will meet your needs best, in the future.

If your social circle doesn't include your brother now and you wouldn't want him to be an uncle to your children, etc. then do what you need to do -- for you.

If it is important to you to build a better relationship and have him a part of future special occasions in your life, then look for ways to resolve the conflicts now. Perhaps some kind of counseling or maybe both of you could sit down and have a discussion with a relative, friend or other party not so closely involved.

I have one brother and two sisters. The brother and sister who live out of state don't have as big of a vote as my sister who is here working to take care of my mother, when I, as medical POA, make decisions. Some times the only vote that is important is mom's, through her Living Will.

Often, we care so much, our focus is totally on the life and needs of the person we care for. Part of taking care of ourselves, is to remember that, no matter what, someday that relationship will end and our life will still go on. It was kind of a shock to me, the first time I heard that, because I am constantly considering what is in my mom's best interest. I must start planning for, and when I can, living a life where my hours are not filled with mom's needs.

I hope you and your brother can workout some kind of compromise, so that, in the end, you can look at each other and say "We did the best we could do, for her."

Unfortunately, the social worker is one of the best double talker's at the rehab. I must say their people management skills are top of the line. You know you have been "managed" every time you question anything.
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Unfortunately, the social worker is one of the best double talker's at the rehab. I must say their people management skills are top of the line. You know you have been "managed" every time you question anything.

Mom's primary care physician is the medical director at the rehab. Her attitude has been that we are expecting mom to do things she doesn't want to do.

Today, the social worker told me the equipment had been ordered for delivery on Friday. All I can do is wait and see.

I have been,and will continue to spend as many hours a day as possible at mom's side. My sister is often there when I am not..

Only the speech therapist has given us any progress reports. She will even call me at home, if she doesn't connect with me at the facility. the rest have a habit of starting their sentences with "I thought you knew..."

I cannot wait until I can take her out the door on Saturday.

the saddest thing about all this is that this is considered the best rehab facility in the area. I don't want to know what the others are like....http://www.agingcare.com/assisted-living-facilities

We have been given mixed messages throughout our mother's stay. They refuse to train for any activity that would be helpful when we take her home, have delayed ordering necessary equipment and other a ...Read More

We have been given mixed messages throughout our mother's stay. They refuse to train for any activity that would be helpful when we take her home, have delayed ordering necessary equipment and other aspects of discharge planning. Each person is given different information each time we ask questions.

Every discussion comes down to "you didn't talk to the right person" or "you don't undersand the meaning of the terms we use."

They have NEVER answered a yes or no question. Phone calls are not returned.
We were told that she would be discharged, but that was delayed since they never told us about the need for certain equipment and they did not order it.

I want to just remove her from the facility, but we do need the equipment. I fear they will charge us with elder abuse because they document that we do not show up for training (even though none is scheduled)

They change her care status to "restoritive care" I do not know how they will define that.
What can we do?

mizunderstood10,

I believe understand what you are talking about. I have one sister who lives with my mother, one sister in another state and a brother who also lives in another state.
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mizunderstood10,

I believe understand what you are talking about. I have one sister who lives with my mother, one sister in another state and a brother who also lives in another state.

Those who lve in another state decided, long ago, that our mother belonged in a nursing home. In their eyes I am foolish for wanting to take care of her.

The sister who lives with her believs that mother should be home, no matter what the ciircumstances. However, she works full time and the "busy season" where she will be expected to work as several hours overtime daily, begins in the next few weeks. She has a teenage son who is involved in sports, so she HAS to be at his games. She believes that because she is so busy she must make her social life a very high priority to relieve HER stress.

I already handle all of mom's financial obligations through ajoint account we set up long ago, so I am very aware that my sister contributes nothing to the household budget.

She also convinced mom to take out a loan for her, which is paid directly from my mother's checking account. The arrangement supposedly was that she would deposit the money in mom's account every month. This has not been happening . The lawyer said that the money owed is simply an asset to mom's net worth and would be deducted from any inheritance that my sister would receive. In the mean time, the funds in mom's account arte being drained and not replaced.

I am ANGRY.

We will be bringing mom home from a stint in the hospital and a "short stay rehab" ( nursing home) this coming week. My sister who lives with mom, is making it quite clear thar she will be very busy and the only time she will be able to do "anything" (which does not include mom's care) is for a few hours in the evening.

I will be expected to be THE one who takes care of mom. I want to take care of her, because I worked in a nursing home and I know how people are treated. I am not working now because I am on disability, myself. The family "forgets' that I broke my leg and will require a knee replacement. I have had back trouble for years and will be having an MRI next week to find out why my "good" leg is getting weaker even though I depend on it to keep walking. I have been in pain since I broke the leg nearly three years ago. I am not trying to be a martyr. These are simply facts.

There is not much money to hire help, but the sister that lives with mom says "we" won't need to much extre help. No, she doesn't need help to go to work, be with her son and maintain an active social life. I need help to take care of our mother, financially and physically.

I have to say to those of you who jumped right to the financial aspect of the problem, you may have missed the point. To me there is a great feeling of abandonment when siblings don't make an effort to do things we believe would be significant in an effort to help. Like all losses in our lives, we must grieve the loss of connectedness that comes from realizing that growing up together doesn't (in many families) create a lasting bond. The person we are caring for may have been, when they were able, the glue that made the family a family. When no one assumes that role we have lost another facet of what we knew as our life.

I have never felt more alone and helpless than when my mother turned to me and asked why doesn't this child or that child call her? I know I am not resoponsible for their behavior. I share her sense of loss when they do not try to make contact.

I know God has given me the gift of being a caretaker. There are many chapters in my life where I have done what I believed to be His will by helping others. I also know, as pointed out by Thomas Merton, who wrote "Thoughts in Solitude" that "the fact I think I am following Your (God's) will does not mean that I am actually doing so."

I have been told by family members, at times when I am weary or would rather not follow the path I believe to be God's will for me, " But you said this is your service to God." They seem to believe that if God wants me to take care of mom, I don't need their help.

I often feel like I am speaking a forgien language or lving in the Twlight Zone, when I need a bit of time to myself or to get away for a few days. It takes a lot to get my brother and sister's to even hear me. Then I realize they do not know why I am asking for respite. They have never done what I have had to do, so they can't posibly understand.

I understand all to well what happens when a parent stops eating. For half of the past year, my 86 year old mom would only eat a few bites of this or that, if we were lucky. The only things she wanted ...Read More

I understand all to well what happens when a parent stops eating. For half of the past year, my 86 year old mom would only eat a few bites of this or that, if we were lucky. The only things she wanted were cheese curls and chocolate.

She was so malnurished she could not fight off the urinary tract infection she got or the thrush that followed, thanks to antibiotics given to treat the UTI. The thrush (yeast infection) went throughout her body

We had difficulty realizing she had increasing swallowing problems, due to a prior stroke. The main clue is that she sarted coughind more and more after swallowing. I urge anyone with a reluctant eater to watch for this since a good speech therapist can help and aspiration pneumonia is a very real threat.

The doctor asked if she wanted a feeding tube and she agreed to try it. After a few days of discomfort she has tolerated it well and has started to look healthier, in general. It is not difficult to use and is giving her the opportunity to fight off infection. (I am sure there are other places to discuss feeding the controversies around feeding tubes.)

The article about Ensure caught my eye because we will be bringing her home soon, with the feeding tube. Many people who have told us about tube feeding have said that Ensure or something similar is often used for home tub feeding. I will be interested to see what her doctor recomends. Thanks to the article I'll have more information to help push for other options.