Dealing with death is never an easy thing. When it comes into your home, it can be nearly impossible, especially when the person it is affecting is not dead--yet.

Some how the idea of dying at home has been romanticized while reality slips in empathy's door unnoticed, until the work begins. Once reality roosts the haze is lifted only to be replaced with fatigue and second thoughts.

Amyotrophic Lateral Sclerosis is horrible disease because it is equivalent of being eaten alive only worse. At some point while being eaten alive consciousness is lost due to overwhelming pain or loss of blood, but with ALS or Lou Gehrig’s disease the mind stays acute as the body slowly dies. One by one, the body's muscles in the extremities begin to die. Usually the patient looses the use of one arm at time and then the legs until they totally bed ridden.

As the patient looses the ability to move, more things must be done for them including feeding, bathing and the most intimate of toilet procedures. They cannot scratch themselves, hold a tissue to blow their nose and eventually will lose the ability to even swallow. Finally, they will die of suffocation and they will be fully conscious during the whole process.

It is job that we do out of duty and love, but as with everything, there is a price. And, that price is potential loss of the as sacrifice becomes a way of life. It is not easy to have another adult in your home that is not a spouse and even a spouse can encroach on personal space. Caring for an ill person can be difficult. It requires patience, understanding and, most of all--time. It is probably the most important, although understanding, patience and love certainly are nearly equal.

The importance of time becomes apparent when it is considered how it affects everything else. No matter how much love we have for anyone, we cannot operate continually without sleep and that takes time. Most people are not independently wealthy and must work to earn a living, which requires time. Without work most people, although they would have time, would not have the resources to maintain a sick person and, perhaps, not even themselves.

Most decisions to take someone into your home to care for them are made out of love and with the best intentions. However, good intentions and love often overlook the fact that no matter what the circumstances taking care of anyone is demanding and when it is your home, that care is 24 hours a day. Even without outside help, loving family members soon find themselves waiting to exhale as demands are made on their times and resources continually.

Family can help, but they can’t be there 24 hours a day and soon they may not want to be there at all, as each day becomes a little longer, a little tougher, a little less comfortable. The movies glamorize this portion showing the loving son or daughter doing the task of six people, giving constant attention and sacrificing themselves so that they can make the patient’s lat days comfortable. Unfortunately, for both the patient and the caregiver, no one how many last days are left. Getting by on two hours of sleep, half eaten meals while masking any negative emotions takes a major toll on the body and eventually it is the caregiver who breaks down.

I have been that caregiver and the patient is my father. I never expected the task to be easy. In fact, I expected it to get worse as the disease progressed, but I had no idea what it would do to me. I didn’t know if I could wipe snot and feces or wash his most private areas, but I did. Strangely, it wasn’t the hardest part of the job. It was the constant care. I literally wouldn’t have a chance to sit before I had to get up again.

I also discovered that personalities play a big role in giving care and should be a major point of consideration when making a decision to bring someone into your home. For those with families, this is an especially important consideration. Even though a person is dying, their personality doesn’t change in any significant manner and many times the focus of the patient is themselves and rightly so, because it is them who is dying. However, failure to understand this makes the task even that much more difficult.

I believed I could do it all, but after three months, it became evident even to me that I couldn’t do it. The doctors had all ready told me this, but I figured since it wasn’t their father, that they didn’t care, but I realized they were right. Coming to this conclusion is not easy because it means admitting that we cannot do everything and it is especially tough because it means we may have to consider a distasteful alternative--a nursing home.

He is still here with me and I hired a 24-hour caregiver. This allows me and my family time to sleep, work and have a few minutes for ourselves. Guilty feelings hang over me like a Damocles sword, but I now know that this is what I have to do. ALS is a terrible disease. If you haven’t read it, go out a snag a copy of “Tuesdays With Maury” and you will get a clear picture of this terrible disease.

The reason that I am writing this is not for any sympathy, but to alert those who may be considering bringing someone into their home, to consider it carefully and be aware that it is not at all like the movies.

Amun-Ra

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Thank you for bringing this out. I know that the cathartic affects are already taking hold. You have presented much information that is crucial; and as stark as the reality is, your words are no less true.

I believe it is important for families to be made aware of every option when making decisions about the last days of a loved one. And health professionals will do that. But I've learned from what you've said that it is vitally important for us to ask for help that caregivers can provide, because caring for the dying is more than a notion. People also need to understand when the hard decisions must be made, it is no indication of a lack of love. Many times, however, family members have their own guilt and issues that can stand in the way of making a good decision for care.


It's a delicate issue that many of us may face one day. Thank you again for sharing your wisdom.


a

This is an emotional topic to discuss....but here goes...

Having experienced and lived through this, I feel the most important consideration must be the welfare, level of care and comfort of the patient. While it's admirable to want to do this at home and take the weight of the world on your shoulders, many, as you yourself have found out, find that there is so much more involved in doing this than they first thought.

There are so many physical and emotional side effects of doing this, and it takes a strong person, one who has a lot of help, I might add, to do this successfully. Otherwise it will wear you down and tear you apart.

I, along with my four sisters, nursed our mother at one of our sisters houses, as she suffered with cancer. We had the help of home nurses who came in daily and a family doctor who was willing to make house calls and give advice whenever needed.
But, even with the help of outside professionals, the main care-giving was done by us. It meant our family life went on hold.
We were all lucky enough to have husbands who supported us and other family members who helped with the children, otherwise I don't know what would have happened.

I will add, that if you are not "grown up" or if you don't fully appreciate the gift of life, you will, when you nurse a loved one who is dying. This has been the most heartwrenching task I have ever done and I think will ever do, but it was also the most rewarding (spiritually and soulfully).

And on another note Ra...doing this has made me a firm advocate for euthanasia...we have the freedom to do so many things, but yet, not the freedom to die with dignity.

K

Thanks you all for sharing back with me. This has been and is a difficult time. I am standing night watch once again as I lost my mother to cancer. It was much the same, except I was much younger then and didn't realize it takes more than a notion.

Euthanasia is a complex subject. Personally, I believe that it is a viable option once the quality of life has disappeared. Others would say it is a cop out. It is amazing that we will treat our pets more humanely than each other. A pet that is terminally ill will be "put down." Yet, we find it hard to be so magnanimous with our human loved ones.

I suppose we hold out hope for a miracle, but it is more selfish than anything else. We don't want to let go. My father made it clear that no "heroic" efforts were to be made ateempting to keep him alive. I am on the same page with that. It is sad to live just to live because in reality it is notliving at all--only surviving.

Yes, sometimes tough decision have to be made. They will never be easy and they aren't supposed to be, but they have to be made. You hit the nail on the head about help. We need help! I know I wanted to do it all, but physically and emotionally it quickly became too much. I couldn't go on if I wanted to do so. I had to get help.

Also, people all react different in times of illness. My mother actually made you feel better when she was dting because she had so much concern for how everybody else was doing. Others are tyrants and make you jump through hoops and still they aren't pleased. Still, you need to know this up front.

Ra

:heart:

I believe that euthanasia has been in the past and will be in the future, a delicate and emotional subject for people to discuss..however after hearing my mother beg for someone to let, or to help her die , so that she might be free from the pain and suffering, and asking us why we were letting her suffer like this, I soon realised it should be up to the individual to choose whether their life has any quality, and if not, then they may have the right to end it. I know it is definitely a personal issue to agree or disagree with euthanasia.

And Ra, there is no harm in asking for help and giving yourself the rest and time to unwind that you need at a time like this...you can only do so much, and you have to accept that you cannot give of yourself every minute of the day...

on the other hand I think you need to always keep in mind, how much the loved one you are looking after, is suffering, and therefore forgive them for any harsh words or things that might be said in anger....it's a time to walk a mile in someone elses shoes...it's not easy, but it will make you feel so much better as a person when they are gone..

as a final point Ra, I think this is an experience that everyone will handle and react to, in a different way...there is no right way or wrong way of doing it, as long as we are doing our best and giving the best care we can at this time...then that is all we can ask of ourselves...my thoughts are with you...

K

You are so right--it ain't easy! It seems like we should be able to do more but we often forget that we need to eat, sleep and be free also because if we don't do those things we become unable to offer help at all.

Your words rang in my ears as I thought of my mother wanting to be released from the pain and agony and the best anyone could offer her was drugs and they even wore out. Yes, I agree it is a touchy subject, but ultimately it is one that we will discuss. There are so many people who are unprepared to die. When I say that, I mean they are mentally, physically, spititually and financially unprepared.

Some think that it is tradition to take up a collection so they can bury old so-and-so. NO, that is the way it was when we weren't able to work for ourselves. If we can afford a television we can afford a burial policy. If we can pay rent, we can get a burial policy. Believe it or not, for as little as five dollars a month it can be done and then folks are trying to take up a collection or hoping rich Uncle Louie will come through--again.

There should be no fighting over material items. It should laid out ahead of time as much as possible. It is not a pleasant subject but we all die and we all leave someone behind who has to deal with the world and that includes greedy relatives, friends and the tax collector.

I ain't lookin' to leave no time soon, BUT, if I do, they won't be takin' up a collection and any fighting over material items won't be because I didn't leave clear directions. Telling somebody ain't enough. Write it down. A lawyer doesn't even need to be involved--a notary and wirnesses will do.

Ra

:heart:

This is an extremely difficult situation, but it happens in every family. My grandmother has Alzheimer's Disease and I can't tell you all of the trials my family has gone through trying to keep her from having to go into a nursing home. It is very difficult when you have someone who cannot be left alone at all. We do not have the resources to hire a nurse, but fortunately we have found ways for her to always be in the care of a relative. Trust me, that has not been easy. It is much better when the caregiving can be spread out between different people, that way one person does not get completely burned out. Taking care of an ailing adult is more than a notion. It really takes a special kind of person to even be able to do it. You are right; desire alone is not enough. You may love a person with all your heart, but until you've done it you won't realize how truly demanding the job is. It can be emotionally, physically, and financially draining no matter how much you love that person and want to make their last days as pleasurable as possible. It really takes a great deal of patience and this is where the guilt comes in. We get frustrated and then we say how can I be frustrated this is my grandmother/mother/grandfather/spouse I shouldn't feel this way; look at all they did for me when they were well. My grandmother has six children, and my mother always says, "One mother can raise six children, but six children can't take care of one mother."

It is difficult to care for someone who needs constant care when you have to go to work, take care of your own children and family responsibilities, run your household, and maintain some type of time for yourself.

As it stands now, my uncle who does not work lives with my grandmother and takes care of her during the week and my mother and 2 aunts alternate weekends.

My grandmother has her good and bad days. She is not in her right mind and most of the time she just sits there and hums, but sometimes she gets very excited and babbles incoherrantly and gets up and gets very animated. My mother reminds us to think of her as a todler and treat her accordingly. Many people who would get frustrated at an elderly person for exhibiting such behavior and might even deal harshly with them (think of all the cases of elder abuse, it's not just in nursing homes it's by family members too) would be loving and tender in dealing with a child. The things that we have to do for them are similar to the things that we have to do for a child, feed them, change diapers, etc. I have a 5 mo. old daughter and she has her times when she can get a little rambunctious. The last time my grandmother had one of her excitable days when my mother was caring for her she asked me how we have so much patience with my daughter, but get so frustrated with my grandmother. I don't have the answer to those questions. Why do so many people find it easier to care for a sick child than a sick adult? Is it because in our society we have strayed from revering and respecting our elders and we worship youth?

I'm having a difficult time with this post because I am trying to figure out how to get out what I have to say, but there are so many emotions tied up with this situation that I find myself rambling. There's a lot more that I could say, but I could go on forever and the bottom line is that it is a very confusing, conflicted, sad situation.

When I think about my grandmother's illness I am also sad because I know that my younger cousins will never know what she was really like. My grandmother has been ill for years now and my cousins who are in their early teens and younger don't remember what a good grandmother she was. They don't know that the finnished garage in her home that is now my uncle's bedroom used to be a playroom just for us grandkids. They don't know that she had all kinds of fun toys and books down there for us. They don't remember her taking us for walks on the avenue to come home with coloring and painting books. They didn't sit at the kitchen table and practice writing their ABCs in lower and upper case. They don't remember the hot cereal with coffee-mate for breakfast and the jello or oatmeal cookies for an afternoon snack. When I was just learning how to read who else would just sit on the phone and listen to me read whatever I could get my hands on and act like it was the most interesting thing she ever heard. I could go on but you get the picture... or actually I won't go on, because you don't really get the picture. That's my point. All my younger cousins have of her are stories, not the real experience. Their memory of their grandmother is the crazy acting lady who constanly hums a tuneless song.

I also think of this. What of my own parents whom I love dearly? What if they need this type of care as they age. Will I be able to handle it? I love them with all my heart, and I feel so selfish for even questioning myself. They've cared for me when I couldn't care for myself. It is an agonizingly heart-wrenching topic.

Ra, I applaud you for having the courage to share such a deeply personal and painful experience with us. I might have posted more, but I haven't the courage.

Much love to all who posted on this topic,

Danielle

:heart:

I feel your pain in caring for your grandmother. As you said, it is more than a notion. It is difficult. I extend my solace to you during your difficult times and thank you for replying. Perhaps, others lives will me a little less hectic or at least they might get an idea of the reality of caring for a loved one.

Ra

;)

surely i've been their and done it for a long three years with my Father and being in the nursing field for 10 years the reality
seem far yet close to know that caring for ya loved one is tuff
i've seen this in many family and i've seen so many just don't care
to put them self in a spot ......some of it i understand and some
i don't ..

It is easy to make judgements from the outside and say what we would have done and it it had been I would have done this, but until it drops in your lap--you don't know how you will handle it--thanks Rich for saying it right--Ra

:)

yes many say one thing and then when that very time comes
before them they do something else to off set the fact of what
is really going on in the live of whom so helpless
indeed our love one would want us to continue our lives
yet in heart they wish to be cared for it was a road of many
twisted turns but that very path so many turn away from
i stayed right their til the road ran out and it do run out
one thing for sure we all will be in this path just keep living
so many can't handle it any way and the one's who can don't

As much as we vow what we will do in amoment of crisis, we can never be sure until that moment arrives and even then we may waiver--I would suggest that anyone who thinks about taking on this mantle to consult with others who have done it--it is not an easy road, although it can be very rewarding--Ra

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