New caretaker...what to expect?

[tande]

Hi - I'm new here as my boyfriend was just diagnosed with ALS. So far it is only effecting his walking stance and balance. He also has the muscle twitching in his arms. Anyone else out there that is in the early stages of taking care of a loved one with this horrible disease? I have no idea what to expect. Thanks.

 

[BethU]

Hi, Tande ... I'm so sorry your boyfriend has been diagnosed with this lousy disease. It sounds like he will have great support from you, which is so important.

It's impossible to predict how fast things will progress ... hopefully he will progress very slowly ... but one thing that is important for all ALS patients is something you can help him with: he needs to keep eating well so that he does not lose weight. So: good healthy nutrition and keep his calorie intake up.

We have a lot of caregivers on this forum, so I'm sure you will get a lot of support and good information here.

Take care.

 

[OlgaS]

Hi Tante....
Well, like Beth said everyone progresses so differently. I think my husband would be considered in the earlier stages. So far he has difficulty walking, has twitching in his arms and fairly recently started having problems with writing and bending down (putting on shoes, socks etc)

My husband was diagnosed last July and I think because I see him everyday sometimes it's hard to tell how much has really changed. Still breaks my heart everytime I have to watch him struggle with something, so I'm not sure that I've been able to prepare myself either.

But don't forget to take care of yourself along the way. Which I'm not very good at myself but I think the further we get into this the more I realize that you need to take care of yourself too. Can't take very good care of someone else if you yourself are falling apart.

Take care !

 

[lynster]

Hi Tande,

Take a deep breath.

It is difficult to see our loved ones struggle and suffer, but 'specially if they are men, they do not want any help. (!) As was said before, you won't know how fast the progression until it happens. A positive attitude helps lots - which leads to...

If the whole thing is getting you down, go see your doctor and ask about anti-depressants. They are a good thing.

Talking out your problems can help you, too. Some folks use prayer - I usually pray while talking to my cat. She listens, and gives me good feedback by purring.

My husband was diagnosed in August 08. We are now having to deal with orthotics, and considering a power wheelchair. He can walk, but not very far. Everything comes up in its own time. Somehow we find the way to take care of it.

I have not posted much, but I read and appreciate most everything being said here. If nothing else, I feel welcomed!

We say live for today & plan for tomorrow!
Lynn

 

[kylisa]

Whatever you do, make sure he does what he likes and/ or wants to do as much as possible while he is still able to do it. There is no putting things off until tomorrow anymore. This disease is a thief. Make memories before the ability is gone. Take in consideration everything the doctors, clinics, etc offer. Don't wait too long to start utilizing things like walkers, powerchairs, voice devices, bi-pap, and peg tube. Most of all, love him through this horrible disease. Please don't desert him. He will need all the love and support you can give. I know this is a terrible fate for the both of you. I also know, in the end, it will be one of the most rewarding commitments you will ever have to make.

 

[Harry77]

Sounds like everyone covered the high points pretty well, but I would reiterate the anti-anxiety meds, doing things now that will become more difficult in time and using appliances before they become a necessity. We can’t beat this disease yet, but we can maximize our quality of life and enjoy more in the time we have left. Keeping some time for yourself is also very important. When I was first given this advice by another caregiver, I thought it was so selfish, I didn’t give it much thought. As time went on, I saw how much stress that this illness puts on both the caregiver and patient; I realized “burn out” is a real concern. You really can’t take care of someone else, unless you take care of yourself. The last thing I would recommend at this point would be to educate yourself on this disease. There are so many variations and ways that it effects people that no two cases seem to be the same. The more you research, the better equipped you both will be to handle what’s coming down the road. In closing just remember, we’re all heading to the same destination, but it’s the path that we take that defines us. Good luck and stay strong.
Harry

 

[tande]

Thanks everyone

Really great to hear so much support from all of you who responded to my "what to expect" question. I thank you all and wish everyone strength and love through this difficult disease.
-Tande

 

[tande]

olga S - My boyfriend sounds like his condition is somewhat close to your husbands. He was diagnosed in January 2009 and has a stiff walk (which Backloven helps) and has the major twitching in his arms. His balance is off so he has to sit down to put on his shoes. I'm sure hoping his condition stays this way for awhile and does not affect his speech/breathing. He's already told me he will refuse breathing support and is hating the idea of a wheel chair. Just last year we were skiing black diamonds. Seriously horrible.

 

[eireannach]

Hi Tande,

I can't really say much more than what the others have said, however you'll need a support team as best as you can get. I pray that you find them. Sometimes family helps and sometimes they don't. Friends are the same way. True friends will stand by you. Some may not. Not to discourage you. It's not easy, but it can be done. Don't give up! Just love each other and trust in God. He is where the true strength comes from!:smile:

Welcome to the site! Anything I can do to help please let me know!

God bless you two,

Greg

 

[SUZY Q]

HI,

I just started taking care of a lady that's had ALS for 5 years. she is in a wheelchair, has computer with voice, and can still hold her weight if feet are planted straight. Her left side is weaker than her right, so you have to feed her on right side of mouth in back. Pills also have to be put in the back of her mouth, almost her thoat. She lives on her own with hired caregivers who mostly treat her like crap. She has a little strength left in her arms and legs but very minimal movement. I just try to makeher as happy and comfortable as I can. I don't know a lot about this, but my biggest concern is life expectancy. She's had it a long time...I'm always afraid of choking and what to do if that happens on my shift. I want to make her life as happy as I can considering what she's had to put up with for the past 4 years with these caregivers. They feel like she should be GRATEFUL, when they are GETTING PAID...IT'S THEIR JOB! She is grateful, but to lay her on her back flat and tell her off, threatening to leave her that way. I'm afraid the STESS alone isn't helping her. She eats pretty well, but it takes an hour to feed her. I can't lift her so she got me a lift. The nurse is going to show me how to use it. I quit my other job so I can be available to her if she needs it. I FELL into this job...I've never been in health care, but just seeing how people treat those who are unable to care for themselves has made me decide to go back to school and get a CNA certificate just for the CPR in case something happens. How long can they live like this? I want to HELP HER LIVE A LITTLE. She's smart and feels she's blessed because she can see, hear,has her mind, and has a heart. The only thing depressing her is the way some of these caregivers treat her. Any Ideas, comments, or info would be appreciated.

suzy

 

[cukita99]

hi suzy, there should be more caretakers like you. that lady sounds like me except my son leaves with me. ive been lucky for 3 years with my hired help.

 

[hope_faith]

Hi Tande, I'm sort of in the same situation. My husband was also diagnosed in Jan 09. Although from reading your post, my husband might be a little bit more progressed in the disease than your boyfriend is. His speech is very much affected and he's gotten very weak in his arms, hands and legs.

Like you, I'm in the learning phase and feeling very overwhelmed. Welcome to the site. It's good to be around others who are dealing with the same thing.


SuzyQ- I admire you for wanting to help this woman out so much. You're an angel sent to this woman and I'm sure she appreciates your kindness and help. God Bless you~

Take Care,
Judi

 

[brooksea]

Suzy-

If you can get a recording device to get these cruel comments down, do it! Then take the steps to get social services involved or threaten to do so! This is mental cruelty! She needs a new care giving service!

Dear God, I can't imagine someone being so evil to a person that cannot move!

 

[SUZY Q]

I don't know how to get them on tape...We are paid by the state..she hires her own people...but what's wrong with them? She's had this problem for years...She can be PARTICULAR...but I've said to them "you only have to please one person...HER" Who cares if se wanted you to do headstands in the living room! You're getting paid for it! She got me a lift but I have to wait for a nurse to show me how to use it. I wish there was more I could do for her...find some more help. I admit it takes a special person to take care of her...but if you can't handleit, quit. They call off, don't show up. I've been there about 1 1/2 months and it took 2 weeks to train me for 2 hours twice because of people not showing up. She called me in after my first training just to feed her because she hadn't eaten in 2 days! what is wrong with people?

suzy

 

[brooksea]

Well, maybe at the very least you could call the ALS Assoc in your areea to come visit and access her situation. They may be able to offer some advice.