MND and being single-part II

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vmd

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For those who are single and facing ALS alone, but married types can also chime in!

It seems the most of those with ALS on these boards are married and have a spouse that takes care of them. Then, there are those of us who live alone and have to face our decline alone. I am wondering how those of you who are alone are planning for your future. In addition to being alone, I am principally responsible for taking care of my 12 year-old daughter who lives with my ex-spouse. This means I must continue to work as long as I can. Recently, I have been experiencing more limitations in my daily functioning and the possibility of needing help is perhaps closer. Most of my fingers on both hands hurt when I put pressure on them and so my pinch strength and grip strength are being affected. We rely so much on our hands to conduct our daily activities that we take these for granted until they become non-functional. Any thoughts would be appreciated.
 

rose

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I pretty well have the same questions. It is on my mind too. I'm no longer married, and my boyfriend of 7+ years travels for a living. He has no choice but to be gone at least 15 days a month. I honestly don't know what we're going to do. Him retiring early is out of the question. My kids are grown and scattered, each in a different state. I think a lot of it will depend on how fast I progress. That is another awful aspect of this type of disease, not only does it rob us of a future that we had assumed we'd have, but it also it makes independence, whether by choice, or by just the cards we've been dealt, eventually become an unrealistic expectation.

I guess I didn't answer anything for you, but you can know that you're not alone anyway.
 

westjlittle

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My first reaction is that you need to be planning for the different stages.

An Occupational Therapist may help you in the near term. I have dealt with loss of hand strength by eliminating zippers and replacing with velcro on clothes, foam pad on my razor for shaving plus other things. At this point I can't tie my shoes too well. Buttons are out of the question. This is only short term.

We discussed long term care at support group one week. If you really are alone, you need to be proactive now. It might be useful to identify a facility in your area that can handle various stages. Independent, assisted and total care. The nice ones are hard to get into.

My wife and I struggled with the financial implications for a while. I don't know your financial situation but a total care facility will be big bucks.

Jim
 

BethU

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This is a much-needed thread. Thank you for starting it. I don't have any answers, except to say that I'm in the same boat.

I'm married, but I'm a caregiver for my husband, who is 81 and has memory problems and really bad chronic pain. There is something else going on with him, too ... he can't eat ... feels too sick ... can't walk steadily ... has collapsed on the ground five times in the last couple of months ... spends most of his day in bed as he can't sit or stand very long because of the back pain ... but the doctors can't identify what is wrong yet.

He is so weak that when he is lying down, he often cannot sit up on the edge of the bed unless I pull him up. Thank heavens, I still have strength to do that.

We have no kids, but do have nieces and nephews scattered around the state, who are wonderful and willing to help ... but who all work at jobs, and have kids and responsibilities. One niece drives up from San Diego every few weekends, and stocks our freezer with easy-to-prepare meals for my husband, and soft food treats for me, which is heroic of her! But this is not a long-term solution.

I have ABSOLUTELY no idea how to go about setting up future care. I don't know when I will need it, etc., how fast ALS will progress. With bulbar onset, I assume I will need home care for a while before going into a facility. I've looked online and there are a gazillion care facilities in L.A., but I have no idea how to evaluate them. And I'm sure the insurance company will dictate which facility I will have to use, anyway, which, knowing my insurance company, will probably be a sturdy cardboard box on Skid Row.

My husband lies in bed all day with tears running down his cheeks from the pain, and I can't stand to see him suffer like that. I am trying to follow the schedule for the pain meds and control his taking them, as he can't remember when he took them last, and tries to take pills every 10 minutes if I don't watch him ... but at this point, if it's within reason, I let him have anything that will ease the pain when it gets really bad. So what if it's five hours between pills instead of six.

I communicate with our doctor by writing. We saw her last week, and I gave her a written list of my questions and concerns about him, and she set up a battery of blood tests for him again this week, and I'm just hoping there will be an answer. But if not, I'm going to camp out in her waiting room with my little Light/Writer and refuse to leave until he is given SOME relief ... either anti-depressants or increased pain meds, or something!

So my long-term planning at this point is to get some relief for my husband right now, make sure his future needs will be met, then have a heart attack.

That's the best solution I can come up with! :)
BethU
 

awieleba

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oh beth~

I did not know about your husband! You are going through soooooo much! You are a wonderful soul and I will pray for you! I just want to send you all the postive energy I can. I wish that I could hug you!

april
 

BethU

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April, thank you! I think good wishes and positive vibes do more than all the doctors in the world!
BethU
 

brendapals

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BethU,
I will also send my hugs and good wishes to you! A lot of times, you can check with the Home Health at your local hospital and get a list of people who do in-home sitting. It sounds like you might need that for your husband?

I found that to be a useful tool when my 91 yr old FIL moved in with us several yrs ago. Also if your pcp office has anyone who can research that for you, I would certainly give them a call.

Please come to us with concerns, there are so many people on this forum more than willing to listen and try to help you out.
Together in prayer,
brenda
 

BethU

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Thank you, Brenda. That helps so much. I hesitate to write about other medical problems, as I figure PALS have enough to worry about! But am always stunned at how strong and resourceful the caregivers on this forum are, and I learn something new from every message that's posted.
BethU
 

vmd

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Beth, you certainly have strength. The good news is that some of the people with bulbar seem to do well for years and the limb weakness does not seem to develop until later (patricia1 is a good example of this). I will keep you in my prayers.

rose: If I was you, I would get married. After all, your boyfriend knows your situation and marriage is the ultimate commitment two people can make to one another. Unfortunately, I am not the one to speak about marriages because I have not been successful at them.

Jim:

Yes. thank you for your suggestions.
 

CindyM

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Beth- you are proof that a sense of humor and a positive outlook go a long way!
 

BethU

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Cindy, thanks! I needed bucking up right at that very minute I read your message. I am so disgusted with the medical profession right now, I needed to step back and take a deep breath and remember all the times they've saved my bacon so far (heart, etc.).

Wrote my PCP a couple days ago about my husband's situation ... really pulled out all the stops in my letter. I have asked and asked for them to increase his pain medication. There is no reason on God's green earth why he should have to suffer the kind of pain he's in when there is relief available. When I ask him where he's at on the pain scale, 1 to 10, it's usually 8. Sometimes higher!

Anyway, we came back from the doctor's this morning with a two-week prescription for Ativan for him, which I had requested, instead of Xanax. In years past, Ativan seemed to help him tolerate the pain a little better. I also asked for something to treat his break-through pain and his depression. But ... they still refused to increase his pain medication, and said that they thought if they could "cure" his pain, he wouldn't be depressed, so they refused medications for depression, too.

Cheesh, if they suddenly think they can "cure" his back pain, why haven't they been doing that for the last 20 years?

So they want to send him back to a pain clinic again (we've already been down that route ... implantable morphine pumps did not work for him, etc., etc ... many useless appointments over and over again and no solution, surgeries that didn't help), and they want to do more X-rays and Cts (He has had so many x-rays and CT scans in the last 20 years, he's practically radioactive). But no immediate pain or depression relief.

I think I'm going to have to get him a wheelchair really soon, as he can barely walk ... can barely lift his feet off the ground. He is shaky and trembling, and has collapsed on the ground twice more this week, I think because he is too weak to stand. The last time, he just toppled off a chair, and couldn't get up. I was at the other end of the house, and didn't hear him calling for a long time. I'm wondering if we could get a wheelchair with a sidecar, like motorcycles have, so I could ride along with him when I reach that point! Or maybe get something like a bicycle built for two, so I could sit behind and pump.

But I hope the Ativan will help dull his perception of pain at least a little. So, getting that prescription is a minor triumph. And they said they would "rush" the approval for the pain clinic, so may get an insurance OK this week for that, and hopefully, we will find someone at the pain clinic this time who actually wants to treat pain.

Then got a call from the insurance company asking if Paul and I would like therapy! (We had been visited by a social worker who said that the only help they offer was therapy.) I said, "Why does the social worker think I need therapy?" He said it was because she was afraid that the diagnosed of a disease like ALS would depress me. (Gee, ya' think?!?) What I should have said, but I didn't think of it till later, was "If Blue Shield really wants to cheer me up, how about they pay for the freakin' Rilutek?"

Anyway, I turned them down. I don't have the energy to spend an hour a week sitting in a therapist's office typing on my little Light/Writer, "I..am..so..sad." Especially, since I'm mostly p-----d off. I'm afraid I would melt the Light/Writer's keys!

Sorry, to vent, but it feels good!
And thank you again for the boost just when I needed it!
BethU
 
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brendapals

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hey BethU,

I certainly hope the Ativan helps your husband. It's amazing what the health care profession, as well as the insurance companies, can ask of patients and their caregivers, when the patient and the caregiver are the ones going thru every day life!

I wish I were closer to you, we could chat over some really cheap wine or something! Don't be too hard on yourself, you're doing a great job at home! I got a cute email today that showed an electric scooter pulling a cart with a recliner on the back- the modern version of the tandem! It was cute.

Keep the faith,
brenda
 

CindyM

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HI Beth- being a little closer to your age I think I can understand. We work all out lives and raise our families and just when it is time to kick back a little, now this! You would think the insurances and doctors would cut you some slack right about now!

Another thought: could elder affairs offer a social worker to advocate for better meds for your hubby? Just an idea...
 

BethU

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Cindy ... that's a good idea about elder affairs. I'll check into it. It reminded me that I have a case manager from my insurance company for my own ills, and maybe I'll see if she can pitch in, too. Paul def. needs someone advocating for him, since I seem to be getting nowhere fast.

It occured to me later that I shouldn't have turned down the "counseling" sessions, as maybe the counselors could have gotten into the fight on our side. I had resolved to accept every offer of help I get, but it is so time-consuming to spend hours in waiting rooms every week for appts with doctors who won't offer any help. And since my speech is almost kaput, I couldn't see struggling for an hour each week to talk to a shrink about how I "feel" about the fact that I can't talk! :) I'm in one of those total fatigue periods right now, which will probably clear up by next week (fingers crossed).

Brenda: love the image of towing a recliner! That's what I really need!

What really bugs me is that these people all seem to think my husband's going to turn into a crackhead if they treat his pain.

Thanks, guys, for your support & understanding!
BethU
 
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