Wishing for a crystal ball (if not a miracle)

[rhiwoman]

My 62-year-old mother was diagnosed in Jan '08. She was sure she wouldn't live to see my second baby (born 5/1/08) but she has hung in there. Now she only has a little movement of her head and is having trouble getting any food or drink down. She doesn't want any artifical feedings or a vent.

This sounds terrible but I want to know when she will die. Of course I want her to live. I want her to be herself again and be able to enjoy my two kids and talk to me. But knowing that things aren't going to get better I want to be able to plan things to keep everyone as comfortable as possible. My family is exhausted from caring for her and we need more help, but I don't know how much we can afford since I don't know how long we will need the care for. My father is 59 and medically unable to work too much longer so I need to think of his long term financial needs as well.

How does you decide how much care is enough? What do you do when your PALS really needs 2 people around all the time? My mom needs two people to move her and is stuck laying on her hoyer sling, which can cause bedsores, if only one person can be with her. I started applying for Medicaid to get more in home care but now I wonder if it is worth it, especially if this journey is almost over. We have a CNA 21 hours a week plus my dad when he isn't at work and my brother is not currently working so he is there 24/7. I'm there two days a week (plus do all of their paperwork and arrange care for my parents). My brother is heading back to work mid-May so we need to save resources to cover his shifts but I don't even know if mom will be around by then. Do you ever feel like you just can't handle it anymore? I also feel guilty because I am missing out on so much of my daughter's infancy caring for my mom, and then feel guilty about that because it seems disrespectful to mom since she won't be with us much longer. I feel selfish wishing mom would live since she is clearly suffering and also selfish thinking that things will be so much simpler when she is gone.

Even if I had a crystal ball I know things would still be hard but I would like to feel I have a least a bit of a grasp on what is happening in my life. ALS is the most horrible thing that I have ever encountered for the victim, the family's finances, and everyone's mental health. I hate this evil wicked disease that is stealing my wonderful mother, my best friend, piece by piece!

-A weary daughter

 

[brooksea]

look into Hospice!

 

[Zaphoon]

To attempt an answer for your question regarding how much time your mom has left - its anybody's guess but you mentioned she is having trouble eating and drinking and doesn't want to be intubated.

I don't know many of the particulars of your mom's condition but I do know this, if she cannot swallow very well, she needs to have a feeding tube as soon as possible. Otherwise, she is likely to slowly starve. Many people start out saying they will not acquire a feeding tube but eventually decide on it and are glad they did.

If your mom remains steadfast against having a feeding tube, you will witness something you will later wish you hadn't. There is nothing like watching a person wither away from starvation. Take my word for it.

There are many service-oriented organizations that would be happy to lend a helping hand to you and your mother. Your local MDA and ALSA chapters may have a listing of them. It really looks like you and your mother need more assistance. I hope she has a change of heart regarding the use of available technologies. If not, I understand.

Zaphoon

 

[laurel]

Hi,
I felt so badly for you reading your posting. I haven't lost anyone to ALS, but I did lose two parents to very debilitating illnesses. I worked full time as a nurse and tried to care for my mom with minimal help when she was dying. And it was just an awful experience. I was so relieved when she was hospitalized in the end because I was so tired that I felt I couldn't carry on much longer. I felt guilty too for turning her care over to others.

I have nursed many people over the years who have refused any mechanical means of support support such as feeding tubes and vents. That is a very personal decision that needs to be respected. My husband and I have often talked about what we would want. From my nursing background experience, I would likely refuse a feeding tube or vent. My husband feels the opposite. I will disagree a little with Kim/Zaphoon about the dying process without mechanical assistance. From my observations in my line of work, it really isn't a terrible way to go and not so very different than someone ventilated and having a feeding tube. Yes indeed choking and aspirating is very frightening, but slowly dwindling away from refusal or inability to eat hasn't been an unpleasant death in my experience. In some ways it is natural in that humans and animals often lose their appetites and refuse to eat when dying. The hard part is that it is slow. And to keep someone comfortable in that process you do have to provide fluids even in wee sips so that can be difficult too. And I know I would pray that my mom would just die quickly, and she didn't.

Making the decision about how much care is enough for someone is difficult too. I was lucky to have one of my mother's home care nurses recognize that I was struggling and had reached the breaking point. She said that I would never be given enough home support to handle the care, and she advised me to take my mom to the hospital via the emergency room and have her admitted that way. She said that if I went through our family doctor they would not likely arrange an non-emergency admission. So I did as she advised and went the emergency room route. My mom was admitted that way and was placed in a palliative care bed.

It is hard to know what to say about how long your mom will live in her condition. It differs so much with people. Some have incredibly strong hearts and can live weeks and others go very quickly. And if hospital isn't an option, it is important to provide the basics even if the family is exhausted. And by basics I mean turning and re-positioning her regularly, giving good skin care via turning and rubbing with a good lotion, giving good mouth care using mouth swabs, offering little sips of water, and if you don't have two people to lift her for toileting to use Depends diapers and change them regularly and wash her bottom so she doesn't get sore. And I think the most important thing is to sit with her and hold her hand and talk to her and tell her how much you love her. At the hospital I would sit with my mom and hold her hand and tell her what a good person and mother she was and it was okay to let go now.

I wish you peace and strength as you go through this terrible time. Please call on friends and acquaintances to lend some support. Tell them that you need help and tell them what kind of help you need. God bless you and let us know how you are coping.
Laurel

 

[Zaphoon]

Laurel,

Thank you for your post.

I witnessed my dad's passing and part of that whole scenario was denying him nutrients as it was said not to do so would only prolong the inevitable. He was unconscious and had no say in the matter. I agree that a person's wishes need to be honored and respected when the choice is their own. I just wish it was something I hadn't been witness to.

Zaphoon

 

[laurel]

Dear Kim,

So many times I wonder why we will freely sedate and over dose our animals to give them release, and it considered to be cruel if we don't do so. Yet we have to stand and watch our loved ones suffer. When my dad was dying, he begged for something for pain. I don't believe that he was in very much pain but he just wanted to sleep and dream and go. The doctor refused to give it to him saying that it would over dose him. I firmly said "my dad wants something for pain now". He was given some Demerol and died shortly after. Both my dad and I knew the consequences. I am sorry for your dreadful experience with your father. My perceptions of what isn't so bad likely will differ greatly from those haven't witnessed many deaths i.e. I'm probably toughened up compared to you as you are a sensitive gentle soul.
Laurel

 

[rhiwoman]

Thanks for your responses. Especially you, Laurel. My mom is on Hospice and has been for about a year. They say she is exempt from the 6 month rule and as long as she continues to get worse they will continue services. That doesn't seem to be a problem. On the other hand we haven't seen her assigned nurse in months. Apparently she is the ALS "show and tell" for the other nurses to see a person with ALS so her regular nurse doesn't come anymore and she gets a new one nearly every week.

The main problem with hospice is the lack of help with day to day care. They do offer 5 days of respite care in a nursing facility once a month. Mom went to a care center for 3 days once while she could still talk a bit. It was a nightmare! She had no way to call for help since she can't move to use a call button and her voice was weak. They wouldn't even attempt to listen to what she was saying, they just gave her the maximum allowable doses of her narcotics and by the second day they gave her a catheter even though urination never has been and still isn't an issue. So I've lost all faith in having her cared for outside the home. I was there with her as much as possible, but with a 3 year old and a baby who wouldn't nap at the facility I couldn't be there all the time to make sure they took care of her correctly. And what about the whole respite bit, isn't that suppose to mean the family gets a break and can feel confident their loved one is still being cared for.

Mom has no desire for a feeding tube. She started this disease at over 250lbs which makes me wonder how the starvation bit will work for her. She is still quite heavy although it is clear that she is smaller but I don't know how much of that is from the muscle wasting versus losing weight. She was very clear that she didn't want to go on if she couldn't speak. At this point she can say a few words on a good day but not enough to have a discussion of anything other than her needs so I think by the time her body gives up her communication will be totally gone. She got a very old DynaVox computer for speech but doesn't have the movement needed to use it effectively. (I'll write a seperate post about that in case someone has ideas.) Hospice won't even consider getting her one of the newer eye tracking based devices and our family doesn't have an extra $11K to get her one.

Hospice is very much in support of using medication to lessen suffering. At first my mom was against that as well saying she was becoming a druggie (to which we joked that it wasn't a problem because it was legal, free and she would never have to break the habit) but now she accepts meds readily. She sleeps much of the time and although it is true that some of her meds could lessen her ability to breathe, hospice and our family are focusing on keeping her comfortable, not on prolonging her life. I think when the end is near we will keep her comfortably sedated, after all at that point she will be completely unable to communicate anyway so there is no reason to keep her alert to her condition.

Thanks for letting me babble on, it feels good to "talk" to somebody. I am considering a CNA 5 days a week, 8 hours a day and an assistant 3 afternoons a week on days when she doesn't get a bath. Then family will cover the rest.

Best,
joy

 

[Zaphoon]

Laurel,

Thank you for your gracious comments. I think a very good thing for anyone to have is a living will that allows a person's final wishes to be known and thereby followed. This is a tool that can greatly ease anxiety on others by eliminating a lot of questions and choices.

I admire you and your nursing skills.

Kim

 

[alsventer]

My sister & I are weary daughters too. We are in our mid-40's and Mom has had ALS since we were in high school.

Dad was her primary caretaker and had help through Medicaid/Community Longterm Care program but it has always effected us. Especially now that Dad has cancer and is in a nursing home himself, my sister & I are her caretakers along with several LPN's & CNA's worth their weight in gold. Not only are we taking care of her but also ALL the red tape of Medicaid, scheduling caregivers, and all her household business. She lives on a vent at home "alone" although someone has to be with her at all times.

My sister is single and has no children. We've always thought that she never pursued the family life b/c of Mom's situation. She just announced that she is pregnant and I have a disc problem due to hoisting Mom about for so long. Mom's health has been declining in the past few years. She's 75 now and just a little older than me when she was diagnosed.

There are pros & cons of choosing life support for ALS patients and it all depends on the persons wishes and what their family situation is because you have to depend on your family so much.

If it were me, I would not choose it. Years ago she & Dad thought she'd live a bit longer, see her grandkids born and then die way before Dad...maybe he could remarry, enjoy retirement, etc. But all those years of stress on him finally wore him down and now he will probably go before her with neuroendocrine cancer.

Now that my sister is pregnant we worry about the effect of caregiver stress on her health and the baby. Mom doesn't seem worried or excited about the baby coming. She cries and says that she will be left alone more. At what point do we get to focus on our lives? How is my sister going to deal with caring for her Mom and her baby? My disc problem is not going to go away so that I can take up the slack. I have 3 kids of my own and feel that I have neglected them to some degree due to caring for Mom and all that goes with it.

I know how you feel, weary daughter. I am weary too. Mentally and physically.

We love our Mom. I don't want people to think we don't. We don't say these things to anyone in fear of sounding selfish, uncaring, whiny..... I'm sure it does sound a bit whiny though. Mom has endured so much herself. Experienced loss of friends, caregivers who don't want to communicate with her (chart reading is her only form of communication).

Caregiving long term like this can cause mental and physical issues and can lead to resentment and guilt feelings. I don't know the answer but it sure feels good to talk to others in similar situations.

As far as your situation goes...getting a feeding tube will help her live a little longer. Even if you think she may go soon GET as much help/respite as you can. God bless you.

 

[rhiwoman]

Alsventer- I can't imagine how hard this must be for you. It is so hard to be pulled in multiple directions and having it go on for years sounds simply impossible.

I started this thread on Monday, Mom passed away on Friday. Despite all the suggestions on this site to get a feeding tube, get a vent, etc. I think that mom made the right choice. She didn't want to be stuck alive but unable to do anything. In her last few weeks she could hardly communicate, just enough for us to figure out most of her needs but not enough to really talk. She had no muscles left to use a communication device. She couldn't work her DynaVox and was even having trouble with the muscles in her eye lids. Each person's situation is different and clearly it is a very personal choice but if she had no quality of life it didn't make sense to prolong her life.

I really miss mom, but I don't miss the sad broken mom that could do nothing but lay in bed. I miss my mom whole and enjoying life. This is such a difficult disease, I feel horrible that she is gone but relieved both for those who cared for her and for her that the suffering is over. The day after she died my family went to a tulip festival. It feels so strange to have everyone free to go out.

 

[alsventer]

Wow. This is strange.

I replied to your post on Wed April 15th and my Mom who was on the vent since 1985 passed away Friday April 17th.

Did your mother pass away the same day?

I feel bad about the post I made. Couldn't I have waited 2 days?

I am sad to lose Mom but there is relief and good thoughts about her being in heaven walking & talking.

I'm sorry for your loss and mine but now our Mom's are at peace. God bless.

 

[Gelthling]

Dear rhiwoman and alsventer,

I have been reading your posts today, and would like to say how terrible I feel for your lose's, but am glad your mothers are both at peace. From these posts, I think people are already greiving for the PAL as a whole person, and what they loose before they loose the full battle! I wish both your families all the best, and happy memories of your mum's!

 

[thelma313]

Dear rhiwoman and alsventer,

Please accept my deepest sympathies for your losses. I hope you find comfort in all the wonderful memories you have of your sweet mothers.

 

[alsventer]

Thank you for the sympathies.:smile: