Have I given all I can?

[Pandora]

Hi I'm new to the forum. My name is Amanda and I am caretaker to my wonderful Husband of 7 years, Bran.

My husband was having a few issues with some back pain and he started to have a limp when he walked. I was worried but thought it was just something he pulled. A few weeks went by and he seemed to be getting worse, I got him a cane (more of a gag then anything else) well, he used it all the time and it was helping. Then came the foot dragging a bit and the falling. He fell 4 times in a month. I was really getting worried about him and he was saying no no, everything was fine. Well in December we went out to eat and when we got back home, he fell. Like a tree in the woods. He toppled over and I did everything I could to get him up. Put him right back in the car and off to the hospital we went. After hours of waiting we got back to see a doctor. Took forever and they wanted to send us home, well i got loud and I will admit a tad crazy. They ended up admitting him. Test after Test, and 4 days later we saw a Neurologist. They "tested" and sent us home. A month later he called us in for a visit and to go over the test. Well he walked in and sat down and said you have ALS, and then walked out leaving us with a nurse. Talk about a awful bedside. We were given a Rilutek pamphlet and a script for it, and that was it.

I had never heard of ALS so I wante dto know what we were facing. I googled, I yahoo'ed, I WebMD'ed. I was floored. I was afraid, I was PISSED, I was sad. Having no insurance, and him out of work, I didn't know where to turn. I called the county hospital and get on their "plan". Ok well it helped and we had access to doctors, or so I thought. We saw a doctor and was able to get a few things he needed but not any of the scripts (in my area Rilutek is over $1800) But we were starting a file and getting some information. We were refered to the same Neurologist he saw in the hospital and we went back to see him. He wasn't any more help then the first time. Ok things had to change. I applied for his disability and talked to the loacl ALS chapter. North Texas ALS. They were so awesome, they gave us a wheelchair for him to use, a walker, a potty chair, and a ton of information.

ok now we are all up to speed. We just got the award letter, so it will be something coming in. Medicare insurance... thats going to help. But I am so tired, I am overwhelmed and over tired. We will be able to start seeing good doctors in May. and we can get the drugs he needs.

We have had to move in with his father and brother. They are family and you would think that they would be a bigger help. But they are not. His father only sees $$$$$ (what a joke) and his brother is more invovled in his own life then doing anything to help his brother. I thought that moving in with them would help us out. Its been nothing but more work. Bran has progressed so fast that he is barely walking, he needs me for his every day needs now. So I can no longer work out side the home. He can still talk but that is going very fast. I now have to cook for 4 people instead of 2. Laundry for 4, two cats and a dog. Baths, meals, massages, getting him up and getting him back into bed, I feel like I'm up to my eyeballs in pee and poo.

I am only 32 and he is 34. We are so young, and we had such a great life. I feel like he is being stolen from me. There is nothing I want more then my husband back. I don't know if I can do it. I sat in teh car the other day and looked out and fought the urge to run. I wanted to drive, go as far as I had the gas to go. I love him so much, and I miss him already.

I cry every night, when he is sleeping, just to cope. I don't want him to know that I'm feeling this way. He feels so bad about how our life has changed. There hasn't been any intimacy between us since December, I'm not sure if it's him or me. I try not to see him in a clincal way, but it's hard.

Any advice or tips.. or anything is welcome. I'm at the end of my rope.

Thanks... feels better just to get all of that out.

 

[heymom05]

You have to speak up for yourself. You are not the nursemaid for the entire family! If you have to, only preparevwhat you need for you and your hubby! When do you go to ALS clinic? Find a support group? Find a friend to go have coffee with. Hug your husband, he needs that too. You can always email me [email protected] for help too.

 

[kmendsley]

Can't become consumed with the caregiving. Need to sit down with the family and say, look I moved here for your help! I can't do this all by myself...and you shouldn't have to. It is too much for a person. I used to take care of my grandmother (who has stage 4 breast cancer) and it just got to a point where I realized the only thing I was doing was going to school, work, and back to her house to take care of her and that was my life..I didn't hang out with friends and I knew it was becoming too much. Sometimes it helps to schedule out a time . For example, start with a 1/2 day or day per week. Go out and do something you enjoy or even just walk outside the house and sit in the sun for a while to figure out your own emotions in this and have a breather. Speaking as someone who used to be a caregiver, and now am going to be the patient( I was diagnosed with ALS yesterday) both parts of me want to make sure that the person who is either part of it or taking care is taken care of themselves. Hang in there Amanda....and know you are not alone in this.

 

[abbas child]

Hi Amanda, You're getting very good advice. I want to repeat Gina's telling you to hug your husband. I can't tell you how many heartbreaking times I've read of a patient never being touched (as in a hug or a kiss) by their spouse. Personally, I think telling him you love him, frequently, is also important--we do not want to become "the patient" at all--but you know that, I feel sure. It's a fine line. I think, in summing it up, try to give less to his father and his brother, and try to spend some loving time with him, and even ask him if he feels like making love. If he knows you're willing, that might help both of you reconnect in a meaningful way. I pray you will experience joy again, Amanda.

Oh--I am a patient, not a caregiver--but wanted to speak up on behalf of the male patients--if possible. And if your husband has some good friends, please ask them to visit. Ask for help from any friend who offers. Friends are often the ones who do the real giving when needed.

Hugs,
Ann

 

[Jason's Dream]

Sounds a lot like my husband and I. I was 30 when he got his diagnosis. I am now 31 and he is 37. We have a 5 month old little girl and a 3 year old little boy. We have been married for 6 years. It is hard, I won't deny that. You need to talk through things with your husband. He is hurting, angry, helpless, and grieving and going through alot of the same emotions you are. You need to go through it together. Don't shut him out. I know in the caregiver roll you can get to where you are soo worried about his physical needs that you miss meeting his emotional needs. He needs you now more then ever. My husband is now bed ridden and about to be into hospice. Tell him how you are feeling. He wants to know. Ask him how he is feeling. He soo needs to get it out. Tell him you love him daily. As far as sex, it can still be done. Make sure to hug & kiss him, hold his hand. Make sure to do couple things. If he can go out on a date, do it. If he can't go out, make a candle light meal for you two at home. Get pizza and rent movies, etc. As far as his brother and father, you need to set them down and explain to them you moved in here to get help. That you will not be doing thier laundry or dishes and that they can start helping with the care of your husband. Sitting with him so you can get away at times or to run errands, etc. HTH.

 

[Pandora]

Thanks guys! I have taken all you guys said to heart. I will make it a point to hug him and kiss him everytime he needs me.. and even when he dosen't ask. I know we can make it. All of your supporting words mean so much. I also will be setting up a family meeting and getting them invovled. I will no longer cook for everyone all the time. I will be setting up a "girls night" just to get out. He needs me and I need him. you guys are so helpful. Thanks again.

 

[heymom05]

Yay Amanda! You will be so much happier when you implement these changes. Your husband needs you to still be his wife in EVERY way. Please remember to take care of YOU too. And never forget we arehere with you.

 

[Chase_Corin]

Pandora,

I know how you feel when it comes to the financial strain of it all. My mom and I sit up nights trying to figure out how we can re-design our bathroom so it is accessable for my father. He needs to step over into the tub at this point to shower and last week almost fell (he would have fallen if the home care worker wasn't there to help) we want to make somthing that a weelchair can roll into easily. My dad jokes and says that we can just roll him out onto the lawn and take the hose to him, but after we stop laughing about dad's humour the stark reality of cost and ability hits us.
Rilutek is over $2,000 dollars here for a prescription, thankfully with my dad's pension he has partial prescription coverage but still affording the our of pocket leaves us rolling pennies for gas broke.
You and your husband are so young to have to deal with this, I am your age but I am dealing with my father's ALS. You find that you exhaust yourself with the details trying to get any and all of the information out there. All of the support he might need lined up before he might need it and it is frustrating trying to find out all you need to know.
You have to watch that you don't burn yourself out. Yesterday I basically had to throw my mom out of the house. She barely ever leaves the house except to take my father somwhere. So I kicked her out, told her to go get a coffee or go wonder around wal-mart and I didn't want to see her again for at least an hour.
I find it therapudic to be able to message people online here about questions and concers you might have because a lot of these people have had similar experiances. Nobody can say they know exactly what your going through but to have people around that you can voice things to other than family is good. Because eventually your family stops listening because they keep hearing your issues over and over.
I find that I tend to cry in the shower, the water washes the tears away.
I am sure you are giving as much of yourself as you can, possibly even more because you need to take care of yourself even more than you take care of him. You being the care giver have to be on the top of your game at all times. I would suggest that you try to gather a support sustem around you of family and freinds that might be willing to help you. Even if they sit with your husband while he watches tv so you can go for a walk. I know Mom and I don't like leaving Dad for any period of time alone, heck mom will even put off showering until I get home.

Just reemmber you are not alone.

 

[Al]

Hi Chase. Sorry about your dad. Where are you getting your dad's Rilutek? I pay $770.00 at Zellers Drugs in Brampton. There is help available from the manufacturer if you need it.

AL.

 

[Chase_Corin]

Hi Chase. Sorry about your dad. Where are you getting your dad's Rilutek? I pay $770.00 at Zellers Drugs in Brampton. There is help available from the manufacturer if you need it.

AL.

I will definately look into that we get dad's at a shoppers drugmart in Perth, the problem here is not many pharmacies cary it because of the expense they have to order it in ever time he needs it.

 

[notme]

HI Pandora

First--you have the right to your feelings--whatever they are today or tomorrow. I teach nursing assisting. One of the first things I teach them is to take care of themselves first. You're not use to him if you don't care for you.

As for the 'family' lack of support--do for yourself and hubby--let the others do for themselves! No one should have to deal with this disease...not the PAL or the CAL. The stages of grief are the same for everyone--even if they are dealt with differently. Often, we're in more than one stage at the same time. Anger is NORMAL. Keeping things inside is harmful for all of you--your husband and you. Both of you need to talk about how you're feeling.

I'm glad the ALSA has given you some information. Do they have support groups in your area? If so, join and get some moral support from them.

If your hubby can still get out and about--it'll help you both. Some ALSA chapters have loaner closets to get things like scooters (some come apart and can easily be put in the trunk or back seat). Spending all your time cooped up won't help either of you, either. As others said--go on dates. Be a husband and wife as much as you can while you can.

Is there a good ALS clinic in your area? I think most states have them--some larger than others.

Others here will give you more practical advice--Hugs--

As other said--take time for "you" too!