Status
Not open for further replies.

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
I have a question that I've been struggling with posting, not sure how to ask, not sure if appropriate, not sure I want to truly know....as some of you know by previous messages, my dad was diagnosed with ALS in Feb 07. He is such a fighter! He is my hero, I can't imiagine what he has been going thru over the past year, as hard as it's been on us, I know for him, as independant as he is/was it has to be such a struggle to keep that beautiful smile on his face. My question is, my dad is getting VERY weak, of course gets very short of breath and now, can't use the bathroom on his own (and I don't mean tinklin'). It's like the muscles in his rectum just have quit on him and my mom is having to help him out with this. Of course this is so uncomfortable for him and last night was horrible. He was in so much pain and discomfort, it just breaks my heart for him and for my mom. Their 38th wedding anniversary is tomorrow (12/21) and my heart aches thinking it will be their last. Also, my brother is leaving for Iraq in January and I feel as if this will be the last time my dad will see my brother. AND....we are trying to adopt a child, our only child (we are currently fostering her) and we found out that it's possible that the grandparents want her, "possibly" so I guess my cup runneth over and I just don't know where else to turn. I am so worried about my dad, I think his heart is breaking for my brother with him leaving and for me going thru all of this with our little one and I feel so guilty because I feel like I am adding stress to him and it is bring him down even more than usual. After all that babling I guess I just wanted to know, does it sound like things are shutting down on him and he is nearing the end? Like I said above, not sure if I want to know for sure but I think I need to hear it to help me in some strange way. Thank you all for your support you give, you are such wonderful people to know!
Michelle (ShellShell)
 

scc

Member
Joined
Aug 6, 2005
Messages
11
I feel so inadequate even responding

My heart breaks for you. Your post brought tears to my eyes.

I have no answer for you and I don't even feel like I should post since I'm still undiagnosed. I just come here to learn from others.

My prayers go out to you and your family. You are dealing with so much. I just can't even imagine.

I hope someone here can give you the answers you are looking for.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi shell shell!I have a neice named Michelle and she gets called Meesh!O.K dont know if i can help you or not but will try my best.You have so many tough questions which im not sure anybody can really give you any definate answers to.Let me tell you a little about my situation and maybe that will help in some small way.My husband was diagosed with probable als....A little over a year ago two of the specialist gave him 2wks-1 month...We have just celebrated our 38th year anniversary over a year since that prognosis!The point is that no one can really tell you when or how long not even the damn doctors...whom in my opinion should never put a time frame on this illness because as you can see they definately were Wrong.!You have so much on your plate right now but you know what unfortanetly life still goes on in spite of what we are going through dealing with this disease.I am sure that your Dad does not look at things the way you do in that you and your Brother are causing him more stress!Sometimes I wish the world and other problems we have while caretaking would just go away because it all seems so overwhelming !I wish you luck in the fight to keep your little one!Maybe a good heart to heart talk with your Dad just explaining your fears would help!......prayers and hugs for you!
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Dear Michelle, I feel for you and your family going through these hardships. Through it all, your dad will want to support you I'm sure, even though he struggles with his own physical difficulties. He remains your father no matter what his own circumstances, and perhaps giving you and your brother emotional support is something that he can still do well with great capacity when all else (his physical abilities) become more greatly impaired. I'm sure he will want to be the person you talk to and the shoulder you cry on even when his heart is breaking and he cannot move the shoulder or put his arms around you with a strong hug the way he used to be able to.
On a more practical note...when my dad found bowel movements increasingly difficult, he took to eating blended prunes with every meal and drinking prune juice (with thick-it so he could get it down). There are also medications and over the counter products which can help. Other people may know more about these, or you can do a search for previous discussions. If I was more tech savvy I'd put a link here for you.
I could not guess how close your dad is to his final moments. I know you do not expect an answer to that, just others' experience. All I can say is that his breathing capacity and how well he is both inhaling and exhaling is important. Near the end, a person can become more lethargic and disoriented mentally. so this is something to watch for also. However, each person's experience might be different. I hear how much you love your dad and I know he treasures this. Sincerely, Holly
 
Last edited:

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Michelle. Has your dad tried the glycerine suppositories? They soften up the stools and make it easier to go. Isn't there any way your brother can get compassionate leave given the condition your dad is in? I know this is a difficult time for you and hope we can provide some help and answers.
AL.
 

Saubier

Active member
Joined
May 1, 2007
Messages
67
Reason
PALS
Country
US
State
MD
City
Colora
Michelle,

I would think your Dad would want you to go on with your lives, doing the best you can. His work may be nearly over, but he should see the fruits of it in you and your brother. Tell your brother to write and send emails, and you visit him when you're feeling positive, and all will be well.
 

l2c

Active member
Joined
Sep 11, 2007
Messages
44
Reason
CALS
Diagnosis
n/a
Country
US
State
Florida
City
Fort Myers
Michelle, like Saubier said your Dad would not want you to stop giving your all to living your own life. He is trying to do the best to live his. My DH has had ALS for a little over two years now and sounds much like your Dad. We also just celebrated our 38th anniversary. I do not consider him to be in last stages. He is taking stool softener and will probably try the prune juice route if necessary. He is very weak and has very shallow breathing. He has a feeding tube, bi-pap for night and a cough assist machine he uses at least three times a day. He is holding his own although some days he feels better than others. We just try to remain cheerful if possible, love him and let him know we love him, and try to be as normal as we can.

Your circumstances make all this a little harder but somehow the strength does come.........God bless......
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
A friend of my family is in the Navy (on a submarine), and he was given a brief leave when his father was dying of cancer. He was flown back home to be with his dad for his last few days. I'm not exactly sure how they knew it was to the critical time, or if it was partly luck that he made it home to see his dad before he passed. He was also able to be here for the memorial service, which I know meant a lot to him.
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
Thank you so much....

You all seem to know just the right things to say to help! Thank you so much for the replies. I was at my parents house most of the night last night, my dad has started running a fever so we are trying to get that down at this time. He has lost SO much weight. I was trying to get his back to quit hurting last night by massaging it and his back is just bones, as his legs and arms are too...it just breaks my heart. He just WILL NOT eat. I am so thankful that I have everyone on the forums to help me out during these tough times, and there are so many of them it seems...

Al, thank you for your suggestion about the leave for my brother, I will suggest it to him because I plan on having a long heart to heart talk with him before he leaves Jan. 2nd. I know he hates to leave also not knowing if something will happen to our dad while he is on tour in Iraq for a year, but I want him to know no matter what, I will make sure everything is taken care of so his mind is at ease. Joining the military is something he wanted to do for a long time, my dad is a veteran also...

I hope each and EVERY ONE of you have a wonderful CHRISTmas. I know we will just knowing we are all together!

Much Love and Thanks!
Michelle
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Michelle, bless your heart. I know exactly what you are going through. It is heartbreaking. My son lost a lot of weight towards the end, too. He was such a good looking, muscular young man. My son never lost his looks, but his weight loss really tore me up. Als is such a bad disease!

I am praying that your brother will be allowed to spend some time with his dad. You are such a wonderful daughter, may God bless you! May God bless your entire family!

Irma
 

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
Michelle, it can be very difficult to come to terms with life as it faces us. It is impossible to read your words without being deeply affected by them.

I have worked in both neonatal and paediatric intensive care units and working in those places one can feel a pall of sadness is ever present. Young lives are frequently lost and trying to help bereft parents through that dreadful time is one of the most difficult jobs I have ever experienced. I could not manage more than 2 years of that work and I felt a complete failure because of my own distress and having to leave that work to others.

Time passed and I moved to other areas of work and I came to realise that sadness is a integral part of every life. I found that when people were near to the end of their days, often in pain both physically and mentally, all they seemed to require was to know that loved ones were near and that they were not going to be left to face their final mortal moments on their own.

You do not need any special training to hold a hand while listening to someone who is weak and unwell. Talking to them, reading to them, propping them up with pillows, keeping them warm (or cool) and generally attending to their comfort. Simple measures, like a fan, can help if the person feels too warm. If they are unable to drink, the touch of ice cubes on the lips will keep them moist and stop them from cracking and help the person to feel refreshed.

The constipation can be a problem and glycerine suppositories and prune juice have already been mentioned. It is often difficult getting a very weak person to the bathroom. If you think it possible to manage, you could consider a commode chair (toilet seat on a wheeled frame) that will fit over the toilet. I would consider using the standard intensive care method; which is to cover the bed with absorbent paper sheets that are plastic backed on the side that goes towards the bed. It is a lot less distressing than trying to move a person to the toilet whenever they feel the need to go.

Respiratory distress can be helped by positioning a person with pillows so that they are sitting at about a 45 degree angle from the waist up. A folding bed table can give additional support for the person to lean on. If you choose to use this method, ensure that the hard edges of the table are adequately padded (use a couple of small soft pillows placed under the arms), to help prevent pressure sores.

Weight loss and laying in one position can produce pressure sores that are uncomfortable and can break down leaving a wound that is a portal for infection. Frequent position changes (side to side) will help to prevent this. Very weak, undernourished people will often need positional changes every 30 minutes within a 24 hour period.

The subject of oxygen being used to assist respiratory distress is often raised. As the saturation of oxygen drops within the cells, because the respiration power is shallow and the total volume of the lungs is not being filled, the cells get less oxygen. This can cause confusional states and these are not helpful. Oxygen is able to supplement what a person is taking in via their own breathing effort. Used as a medical gas, oxygen is of great benefit. Be aware that it poses a fire hazard. Good medical advice is an essential part of good oxygen therapy.

Consider sedatives. Most people will not want to drug a person into insensibility during their final days. Sometimes a person will be so distressed by their discomfort, that sedation will be a blessed option. I doubt the ability of most general doctors to prescribe the most suitable product, in the right frequency and at the right amount, and if you have any sort of hospice near to where you live, or available by phone, you may be able to get some really expert advice on sedation.

My heart goes out to you and your family, Michelle. The few simple measures outlined above are all that will you need to do for your very own hero. Being there and caring about our loved ones is all that is within our power. It is always preferable that the relatives and friends care for a person, instead of having people we do not know, working in institutions that will have a different agenda to ourselves, and who do not know our loved ones. It is clear that medical professionals (with their special view of of illness) frequently gets in the way of letting families do whatever would come naturally to them; if they were left to their own devices.

also Jeff
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Michelle-my thoughts are with you today. I know you and your family are doing the best you can. It may not seem like it to you right now but when you look back on these days you will be amazed at the strength and love you all have for each other. Cordially, Cindy
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Hi Michelle..
What's that saying.. when it rains.. sometimes it pours? You are in so much pain. I've felt too often that things seem to pile the highest on our shoulders when we are least equipped to cope. You are doing the right thing by reaching and talking to someone.. even if it is here on this forum.
Perhaps your brother might want to request a compassionate leave.. but, do not be surprised if your father encourages him to continue on with plans. Birth, life, death and everything in between are going to happen no matter what the name of the disease. Maybe you could let your brother and your father deal with that one on their own? Take some of the pressure off of yourself? Try to enjoy and make some memories and pictures in your mind of your father and your brother right now... tuck them away, just in case.
As for BM's... there are a host of meds and oral laxatives. What has worked for my mum is a combination of a prescription oral laxative and a suppository every second day. My mum also lacks the muscles needed to "go". I highly recommend the suppositories.. either over the counter or prescription (they are slightly stronger) We have had the most success with them.
As for this being the end and things shutting down.. who knows.. maybe.. maybe not. Try to take it all in, I know it's so emotionally draining and frustrating and sad and... oh so many other emotions, but, just try to handle one thing at a time. Just for today... decide that whatever happens for today will simply have to do for the moment... smile and hug your family and hope for the best... whatever will be.. will be... so, go easier on yourself.. you are doing the very best you can given your situation.
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Well Said Paula-Jane

I was there when Garry was at his end and you just dont know. The first we knew was 3 hours before he went his dear mum said to me on a regular visit to the hospital.....Its not long now...I was there and all I can say that after watching Garry deteriorate so Rapidly (1 yr diagnosed to his end) it was the best thing that could have happened in that situation. He'd had enough. It was very calm and peaceful. I'm not sure if that is how it always is this was the only time I have been in this situation being only 32 i didnt think I would be or could be to be honest..I spent too much time worrying about the unknown. I missed some parts of Garry's last year worrying about it something I will never get back........(Wow didnt know I was so affected by it I think this post just became all about me> I will try again later when I have gathhered my thoughts and can ofer some comfort not just ramblings of a crazy sad .woman
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Sorry about that. I think that because Garry's sister Julee my best friend is newly diagnosed thinking about the end was too much for this bear to bare.

Anyway what I was trying to say is that although losing someone you love is very sad and tragic I think that the end of this disease is not something to be feared.....Compared to the pain and suffering of this disease the end when it does come is a blessing and a very beautiful thing.. You finally get to see your loved one at peace. And within time you can remember the good things about your loved one and life before this cruel disease took hold.

Make the most of each day and look after yourself as well

Take Care Sorry you are suffering

My thoughts are with you and your family

Cathy
 
Last edited:
Status
Not open for further replies.
Top