I feel so helpless!

[IluvNY]

My boyfriend was diagnosed in June 2011, he has gone from a cane, to a walker and now we are waiting for delivery of a power chair. He doesn't receive help from his family because they have no idea just how sick he is so I am caretaker. He moved in with me in October because disability payments were not enough to pay rent and of course it's difficult living alone with ALS(?). It's kinda hard for me to say that word as I am still hopeful of another diagnoses. He has been seen by a neurologist at UMNDJ and it seems a waste of time, we go there once a month and the dr. takes blood, have him do a few exercises and that's it. So now, he made an appointment with the ALS clinic in NJ. We are waiting for a approval for stem cell therapy and hopefully he will receive some benefit from it. Last night was the worst, he could not get up from the chair and I had fallen asleep on the couch to be awaken at 3am with him calling my name for help. I tried tl lift him and he fell. I couldn't get him up and he was so frustrated that he told me to just leave him and he wouldn't let me help him. He stayed on the floor until 8am, the ambulance was called and they lifted him to his walker and from there he went to bed. Fast forward a few hours - now he can't get out of bed and I'm just tired already and I hate this MND...to watch an independent man who stands 6.4" 200+ lbs be rendered helpless is unbelievably sad. I left him in the room on the bed, he is trying to roll over, get on his knees, anything just to get up. I can offer very little help due to my size. The MDA org is going to supply him with a "lift" but it will be at least another week. What am I supposed to do, I need help taking care of him, I need someone to cry to, to talk to, I've only told one person that he is sick but I don't share all of my frustrations or just how sick he really is. I am becoming increasingly more and more angry and even sometimes with him. Every day i go to work with a smile on my face and come home to cook, clean with a smile but I feel such rage, I cry in secret. This is a learning experience for me and I definitely understand the importance of friendships, supportive family and resources, none of which he has. I do everthing but still feel like it's not enough. Sometimes i don't know what to say to him, to encourage him....I feel bad for him. I can't imagine what he is going thru, the fears to just see yourself waste away. We now have an aide that comes in 2x week for 2 hrs. How do you take care of someone who loses all muscle function? Will I have to put him in an hospice eventually? I just needed to vent as this has been a rough weekend and I still need to go to the back room and hopefully I can get him out of the bed and to his walker. I have been reading these posts for a few months now since he was first diagnosed and as everyone before me has said - you guys are a terrific bunch, most lovable and supportive. You're amazing and you give me strength and hope. God bless you all!

 

[brooksea]

I'm sorry about your boyfriend. His family needs to be informed immediately of his current condition. They need to be told the stark truth. In fact, you might want to print out the informational pamphlets from MDA to give to them, so they will have an idea where this disease is going to take your boyfriend.

If I were you, I would consult with his doctor regarding in home hospice care. Eventually his level of care will be such that you will be burned out working and caregiving. It sounds like you may be at that point now.

Sounds like he needs a power wheel chair and probably other equipment, so going to the ALS Clinic is a good idea.

I'm sure others will have suggestions. Have you contacted the ALS Association?

 

[kmendsley]

This is a good place to start in getting help. Take a look around the threads of tips, gadgets, other stories, organizations...esp. in your area that specialize in ALS.

Also, it is good to rant out your frustration or just state what is going on so that you are telling someone...not good to keep it all bottled up. Good for you for helping him out...it is very hard to have a family who does not, or cares not to understand a sickness.

Enjoy every day with him...in the mean time before the lift comes I suggest going to ALS loan closet or maybe a church to get a loaner wheelchair for the time being. Good luck to you.

 

[HelenL]

You can't keep this a secret from his family and friends, and you can't do it by yourself! I think the idea of getting the literature from MDA or ALSA to give to them is a good idea.

I told my family pretty early on (except for my kids who I told later on_) and I wouldn't have been able to say the words, so I sent a length email to everyone in my family. I apologized for telling them by email, but told them I couldn't face it person-to-person at the moment and I wanted them to know. I told my daughter a month or so later, as I didn't want to tell her while she was studying for final exams. It took almost another year before I told the whole diagnosis to my sons they were only 11 and 13 at the time of the original diagnosis. I wanted more testing done to tell me it was anything BUT this, and was upfront with them about parts of the disease but not telling them the name until later on.

I'm sorry you're in this with us, and remember we're here for both of you. But you cannot hide it from his family, and you need their help. Good luck.

 

[Katie C]

OK, first question: why has his family not been informed? He has a terminal illness, and you need help with his care! Not just financial but also get your hands dirty help with the housework and cooking and personal care!

Next, please realize that a lot of hospice care is done in home. Neither Glen nor my mom (who died from lung cancer/emphysema) were ever in a hospice facility. And mom was getting 24/7 care at the end.

Please don't try to do this on your own. It's simply not possible. Get all the help you can get.

 

[jacobwilson8]

Do not hesitate to call for help. Don’t put yourself in so hard situation. As all above posters suggested, inform his family immediately. Check out home hospice care services. Hope things will get better for you soon! God Bless!

 

[Meey]

I have just joined this forum and I am so sorry for what you are going through, but it was in many ways a relief to read your story because I am going through almost exactly the same thing and it made me realize that there are other people out there who understand and are also dealing with this terrible disease. I am so relieved to find a place where I can talk about how I am feeling to other people who can relate and maybe help. My husband was diagnosed in September 2011, on my birthday. We weren't married at that stage, but we had been engaged for 9 months, and after the diagnosis we decided to quickly get married and go on a honeymoon to see the places that he wanted to see before he dies. The trip was really hard because his legs were getting very weak and we had to ration the amount of walking we could do. Even so, he was constantly sore, not able to sleep with the worry and the constant fasciculations, and very depressed a lot of the time.

We just got back 1 week ago, and since then he has been so depressed that he's at the point where he can't even talk to me and I don't know what to do to help. He sees coming home as waiting to die. We are both doctors midway through our training, and the fact that he knows what is coming makes it unbearable for him. In the last 3 weeks he feels he has deteriorated a lot and now he is struggling to walk even a few metres or stand still without getting burning muscle pain in his legs. We just joined our local MND society, but haven't been able to access any support groups yet and his specialist is someone we work with at the hospital who I don't think knows how to deal with treating a colleague. We are trying to get into a multidisciplinary clinic but it may take weeks and I don't know how we are going to manage without any equipment. He's too proud to go to our local doctor, or to take advice from anyone, and he doesn't want to use a stick. The worst part is that he has given up on life completely, he doesn't want to talk about it or talk to me, he just comes home from work and sits on the couch staring into space. He doesn't want to see any of our friends, and I feel guilty if I go anywhere without him because I know he is so down and isolated.

He is also worried because he is probably going to have to give up work soon with his level of fatigue, and it's likely he will have to use a wheelchair soon too but I don't think he wants to accept it. He won't let me tell our friends, and the only people who know are our families and a couple of very close friends which makes me feel even more isolated and alone. I know that this going to be a rollercoaster ride of emotions and good but mostly bad times, but at the moment I'm finding it hard to see how we can move forward from here.

 

[HelenL]

I'm so sorry for your predicament, it sounds to me like he's in mourning for his life, which is understandable... but he can't stay there. It's normal to have all the emotions of a death, but at some point all of us have to learn to accept what we have to, and learn to LIVE with the cards we have been dealt. Does he have a fast progression? If it's slower, he may have a long time to keep working and contributing. I was diagnosed nearly 2 years ago and am still working, though it is totally a different situation.

Has he come on this forum to seek answers? If he does, he'll realize how much he can contribute to others, while learning for himself. I would also say that once I finally told people what was going on, it was such a relief. I told my family via an email of the actual diagnosis, it was too hard to tell them in person; I didn't tell my daughter until about 2 months later, and my 2 sons until a year later. I was upfront with them about what was going on, I just didn't say the specific letters...

You're in a tough spot, and it doesn't matter that he's a doctor, we ALL know what is going to happen; but he is in a great position to learn from this, and choose to LIVE, not wait to die.

sending you a hug, please stay strong.

 

[Miss]

IluvNY and Meey,
Without a doubt, the men in your lives are mourning the loss of the life they expected to have. My husband did the same things in the first few months following his diagnosis. It broke my heart, and it made me mad, too. He wasn't the only one losing the life he expected to have. The children and I were, too! I can honestly say that anti-depressants and constant communication helped so much. The advice that the members of this forum gave me on how to approach him about diffent topics helped more than I can ever tell you. There is a treasure trove of experience here. There was no situation that I encountered that someone else hadn't experienced. Everyone is here to help.

 

[IluvNY]

I'm sorry about your boyfriend. His family needs to be informed immediately of his current condition. They need to be told the stark truth. In fact, you might want to print out the informational pamphlets from MDA to give to them, so they will have an idea where this disease is going to take your boyfriend.

If I were you, I would consult with his doctor regarding in home hospice care. Eventually his level of care will be such that you will be burned out working and caregiving. It sounds like you may be at that point now.

Sounds like he needs a power wheel chair and probably other equipment, so going to the ALS Clinic is a good idea.

I'm sure others will have suggestions. Have you contacted the ALS Association?

It's been about a month since I shared my frustrations with the forum and fortunately his physical condition has remained stable but my emotional state is unlike anything i have ever seen, it's like i don't know me...who is this mean, always irritable, stressed out, don't want to go home after work and when i walk thru the door - it's an automatic attitude. I tried to talk to him last week to explain to him my erractic behavior telling him he needed to tell other members of his family because we could use help because i am tired and stressed out, he just stared at the ceiling - no response, just silence. My suggestion/request wasn't even acknowledged, wow...so now i am more frustrated! And our communication is practically zero. I just don't want to talk and apparently he doesn't want to either. I've tried to figure out why he won't tell his family and I've come up with 1)Pride 2) he doesn't have a very close knit family, like getting together for sunday dinners, family outing etc, so perhaps he finds it difficult to ask them for help Considering # 2 - I think it wouldn't matter how close you are or not are to your family, if there is a crisis, wouldn't caring people assist irregardless of how "close" you are? I've known people who were sick and once the family was contacted - folks step up to plate, no questions asked or "cousin who", heck i've seen neighbors who had other neighbors assist them in sickness. I'm considering contacting his cousin and explain the situation and let him step in and handle it. I know this will cause a problem and it's betrayal of my part but I may have to resort to going behind his back and telling his family just how sick he really is. Last week I told him that it would be helpful if family could help out by keeping him company, just come by and watch a movie with him, drop him off lunch or dinner so that I'm not always preparing food at 10pm every night, I am out of the house 12-14 hrs a day M-F, he could have a cousin at home staring at a tv while i am completely exhausted. Something has to change because this is not healthy for either of us and I feel guilty for being angry at him and for not talking to him and not helping him emoitonally and spiritually and for not getting him out of the house, so many things i feel guilty for - but what about his family? While i am completely exhausted, they get to sit and have free time, probably some are sleep while i am preparing dinner, his breakfast and lunch for the next day and have used at least 12 vacation days going to dr's with him, not one member of his family has every gone to the dr's with him and i feel guilty, wow! Sorry for being long winded but u can certainly tell i am stressed and i decided that we are both going to support groups because this is a new experience for me and i need to handle it better. Thanks for your response and no i have not contacted the ALS assoc, but I will.

 

[st123]

IluvNY, I'm so sorry you two are going through this and I'm super sorry you're doing it alone.

I don't think it's healthy or safe for either of you that he has only a single caregiver. I'm not a PALS, so maybe I have no right to say this, but he's not making good decisions and I think you have the right to override his decision about not telling his family. Haven't any of them wondered where he has been the last month or more?

Please call the ALSA association now. Ask for a home visit. When I called, they came out and brought supplies, including a loaner wheelchair, and lots of information. Since you two aren't talking much and this will be new to the family, it would be good if a family member (not a crowd) could be there for the visit. My dad would not come out of his room to participate, but it was helpful for Mom and me.

is he taking an antidepressant? If he's not (or if he is and perhaps it's it's the wrong one), one of you should talk to his doctor about it.

I'm certain he will hate the idea of more in-home care, but please talk to your doctor about it. I sure wish I had more to offer. You're in a tough spot and your anger and frustration are totally understandable. I'm glad you're going to go to a support group. Please go even if he will not.. He's lucky to have you and I'm sure he knows it, even if he's not able to show it right now.

 

[Katie C]

ILuvNY... you said something in your last post that set off a great big red flag.... when you explained to him what was going on with you and your frustration and exhaustion, he didn't react. Later you said he isn't talking? You need to get him a cognitive evaluation ASAP! If he's dealing with undiagnosed cognitive/FTD issues, it would go a long way towards explaining both his behavior and your exhaustion. There are a couple ways to do this... basically yes.. you'll have to learn to be "sneaky." Before his next doctor's appointment, you need to contact his neuro... explain that you are his primary caregiver and you have some concerns about him having cognitive issues. Say that you understand the doctor can't violate doctor/patient confidentiality but that as his caregiver you had concerns the doc needs to be aware of. Explain the lack of reaction, the fact that he doesn't talk. Go to the FTD forum here and you'll find links that will explain what to be looking for. Do you have power of attorney for healthcare? If not, I'd try to get one soon.

 

[IluvNY]

Kmendsley: the lift has been delayed, he told me the other day and now also the wheelchair is delayed another 2 weeks because his pathetic Dr. refused to sign, it took several phone calls a visit and me calling the office yelling at the receptionist before he finally signed off for medicaid. Hopefully he will now drop this loser as I suggested months ago. He can probably manage a few more weeks w/o the chair so I won't contact ALSA for a loaner, but thanks for the suggestion.

 

[IluvNY]

ILuvNY... you said something in your last post that set off a great big red flag.... when you explained to him what was going on with you and your frustration and exhaustion, he didn't react. Later you said he isn't talking? You need to get him a cognitive evaluation ASAP! If he's dealing with undiagnosed cognitive/FTD issues, it would go a long way towards explaining both his behavior and your exhaustion. There are a couple ways to do this... basically yes.. you'll have to learn to be "sneaky." Before his next doctor's appointment, you need to contact his neuro... explain that you are his primary caregiver and you have some concerns about him having cognitive issues. Say that you understand the doctor can't violate doctor/patient confidentiality but that as his caregiver you had concerns the doc needs to be aware of. Explain the lack of reaction, the fact that he doesn't talk. Go to the FTD forum here and you'll find links that will explain what to be looking for. Do you have power of attorney for healthcare? If not, I'd try to get one soon.

Thank you for the suggestion Katie, but it's his personality to not react sick or not sick. He's not talking much because I'm not talking, it's like i shut down after trying to explain to him my frustrations and suggestion to let others know how sick he is and I got no response, so now it's hard to talk to him, i really don't even want to. We obviously can't live like this, so we both need help. I've never cared for a sick person but now I understand why many sick people and their caretakers say people abandoned them during their sickness. It's hard to be around sick people, you pity them, you feel bad, you don't know what to say, it's difficult to deal with seeing a sick people deteriorate so many friends and family just don't. It's sad but true. No, I don't have POA for healthcare, but I will take your suggestion and try to get it. Thank you again.

 

[IluvNY]

I absolutely agree with you, he is not making the right decision by having only 1 caretaker, I told him this again last night and his response was "just let me know when it's too much and I will leave". He has a wall up and I can't get through it. So to ease my burden of cooking late night - he said he doesn't have to eat dinner. I just left the room shaking my head. Regarding his family wondering where he has been - families are different, of course, some are very close and see each other often and some are distant. I can't say for certainty that most of the members of his family are not close but I can say that he is not close with his family, perhaps only seeing them for major family functions. So noone would miss him. I firmly believe that this distance that he feels towards his family is why he will not reach out to them. But when sickness/tragedy occurs that excuse should go out the window. Your family/friend needs help, you help....period! I do plan on overriding his decision to not inform his family very soon. Actually, he/we have not accepted 100% the ALS diagnosis and he has a 2nd opinion appointment at an ALS clinic in NJ. He was diagnosed by a neurologist and I suggested after doing research that he should see an ALS dr. So until then, I won't contact the ALSA just yet. We will have to both be on board and ready to deal with the results.

No, he is not taking antidepressents on the surface he doesn't appear to be depressed but who would not be? I'm sure he puts on a good face so as to not burden me and he is strong emotionally/spiritually. Actually, i think he would welcome more inhome care, he has a aide that comes in 2x/week that assists him with bathing and dressing, that's it. He still manages to get in and out of the shower w/o assistance but it's difficult and time consuming.

Thank you for all the advice and understanding, it's make me feel better that I am not this evil, mean person for being angry at a sick person...it's so complicated -this emotional journey.