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[Jo123]

Hi all,

Tonight was rough, although coming on here and seeing everyone with the same micromanaging issues did make me feel better. Sometimes I feel robbed of my life or a "normal" life. I'm 30 years old and a caregiver when i'm not working full time in a demanding career. Being a CAL is always on my mind which leads me to neglect other areas of my life. At work I think about him at home ( he is 32) and then rush home after work to make sure I can get her to assist him with dinner and bathroom. I don't go anywhere on the weekend as I don't want to leave him--thus leaving few friends that want to just come over and sit. He cannot walk and we are still waiting on his "fancy" wheelchair to arrive. We get visitors once and awhile but not nearly enough. I don't feel like anyone my age can relate to what I am going through and I often find myself angry and mad at people with"normal" lives. I can't fully commit to my career as I often have to rush home or check up. I just keep thinking how is this happening to me? Then I start feeling stupid for feeling this way when my PAL is going through so much more.

Sometimes I just lose my mind, tonight I made him a snack as requested but of course made it wrong. --no surprise there. Every other minute I'm doing something wrong. Somedays I just can't take it! Tonight was one of those nights, crying and thinking about what a normal life I wish we had. And thinking about all the times we had before his personality changed. I had never seen my pal get angry before and we have been together nearly 8 years…Its so hard to watch the one you love slip away, tears my heart out.


Thanks for listening. Any advice is helpful.

 

[Barbie]

Hi Jo,

I am so sorry you have to be here, especially because you and your husband are so young. It sounds like you are overwhelmed and a little depressed. have you talked to your doctor? you still need to take care of yourself--especially because you are taking care of your husband.

when I was really having a hard time of everything, I started seeing a counselor and also started taking a low dose of anti-depressants. both really helped and got me back on track. talking really helps--and the forum is a good place to do it because believe me WE UNDERSTAND.

I would also recommend that you take one evening a week for you--go out with those girlfriends to dinner and act like a regular 30 year old woman. have a little fun. it will refresh you and give you emotional support.

Hope to talk with you again soon

 

[affected]

Hi Jo,
welcome, but so sorry you have joined the rank of amazing CALS here.

Has his behaviour been looked at by the doctors? It sounds like either he is depressed too or could have some fronto-temporal involvement which causes a type of behavioural dementia.

For me, even though this FTD hasn't been diagnosed, I know my husband has this, I know because I've been observing and talking to other CALS for some months and only CALS dealing with FTD write the kind of stuff I am living.

For me, I now cope better than I did when I spent many months wondering was he depressed, having a hard time accepting what is happening, or FTD?

Well who wouldn't be depressed, and who wouldn't have a hard time coping? I'm sure there are elements of that for him too.

But I've also talked for months to some of the most amazing PALS, and whilst everyone has a period after diagnosis where they have to adjust and accept what is going on, people without FTD tend to do this.

I got my PALS finally to agree to anti depressants and it has helped a lot. He isn't as nasty, spiteful and doesn't quite throw tantrums now. He does cry a lot more, but when he does, he tends to talk honestly about what he is feeling. He is also a bit less paranoid now.

This is a great place to get help, talk about what is going on and have others who can say they are in the same boat, and get ideas to help get through it.

hugs

 

[tinyandme]

Hey,

I am in the same situation. I am 33 and my spouse is 49 and recently diagnosed. Working full time and caregiving full time. Very tiring, very frustrating at times. Feel your pain..

Was excited to find a local als support group only to find out they meet in the middle of the damn work day! Some people still work ya know als society!

My friends dont have a clue what I go thru daily and my Family pity me..not helpful! Some are down right rude! Telling me to run and $#$@. We've been together 12 years, hes my bestfriend. What if Id gotten sick instead?!?

Amy

 

[affected]

Welcome Amy!

So sorry you have to join us, but the understanding you will receive here is invaluable. Sometimes we can only empathise with you, but other times we can give useful tips that we have found worked or didn't.

You are right, most others just don't understand. People come to visit, and they didn't see the 2 hours it took me to have him ready and sitting out in a chair. They sit and chat and laugh for an hour or 2, then leave. Doesn't look like it's too bad to them! They don't see then the hour it takes me to toilet him and settle him for a nap where he is off his bum, things elevated to prevent or lessen swellings, feeds through the peg etc.

More importantly they don't see him complain why are these people coming, they see him laugh with them and seem to really enjoy himself. They don't see him then complain about the visit afterwards and make out like it was a pain for him, then tell me all the things I'm not doing right.

We LIVE it, and we too often live much of it in silence. This place is where we can find out way through it together.

 

[zoohouse]

Amy, my husband and I had only been married a year when he was diagnosed, and many of my co-worker/friends said "you didn't sign on for that" and I replied that I certainly did. My vows were, in sickness and in health etc., and I truly believe in "do on to others as you would have them do on to you". Yes, it is hard, exhausting, aggravating, heart-breaking…………….. but I know that when I lose him it will be just as hard if not worse.
When he was first diagnosed a friend told me that one of her best friends in the same town lost her husband to ALS, so I asked her to ask her friend if she would be willing to talk with me. She did, but came back saying that her friend was just too raw and couldn't do it. I later found out from another person, that they had planned on separating just before he was diagnosed, but she decided to stay with him and care for him. Now that I know a bit more about ALS I believe that he had FTD, and made her life very difficult, and also messed her up financially. So, if you suspect that there may be FTD, try to get power of attorney, so that you can safeguard your finances.
My husband does not have this problem, so far, and was more than happy to do this after reading what can happen. Because he is American, and I am Canadian we have it set up in both countries.

It sounds like you love him very much, and I am sorry that you both are going through this. Be as brave as you can, and when you can't come on here and we will listen, and hold you up if we can. God bless you.

Paulette

 

[tinyandme]

Thanks everyone, feel better already ��

 

[Jo123]

Thanks for the replies. I don't think that I am depressed but sometimes I just get those moments where I feel like NO ONE gets it or understands what I am going through. I am not married to my PALS but we were together for 5 years when he was diagnosed, it has now 8 years together and I don't regret a second of it! I went to one of the ALS CALS support groups right after he was first diagnosed and it was quite morbid…it was all focused around death and PALS that had passed. One lady even said to me "you know, you are can leave you aren't married"---crazy! I haven't been back since.
Its nice to be able to talk to people who are going through the same thing. My PAL is recently unable to walk but still can eat and talk…any tips on must haves around the house or to make things easier?

Also, do any of you travel w/ your PALS? We recently just got his customized wheelchair and will be looking into a Van….is it even possible to go anywhere extended amounts of time due to toileting and showering?

 

[Barbie]

Jo, it is hard to travel-- but if both of you are up for the challenge then you should go for it now! Many large hotels have roll in showers so that is not a problem . you just may have to plan more carefully and take more equipment with you but that is the good thing about a van!

 

[mrvaughan]

Hi, I thought I would weigh in on this thread because it sounds so much like things that I have gone through.
I was only married for 4 years when my PALS was diagnosed. It seemed so unfair. I can also identify with friends slowly going away. We use to have such a wide circle of friends and now, just family is left and a friend or 2 that might stop by every 6-8 months or so. I even go through the same thing of getting him ready, and him not wanting anyone to come over, yet when they are there, acts all cool and happy and normal (until recently). I even thought the same thing about the ALS support group that we started to go to. We stopped when it really was just so sad and everyone we were meeting was passing away so fast. Everyone tells me to do things for myself at least once a week, but between work and home, and all the other errands etc, I can't seem to fit me time in.
I also work full time and put my career on hold and don't perform up to the best of my ability because I rush home or worry about home, or make phone calls etc. While the work people are very supportive, I am sure that the missing days and strange hours sometimes runs a little thin.
The BEST part about this forum… When I signed in, I was feeling pretty darn sorry for myself. I had to cancel plans for tomorrow to take my 2 daughters out for their birthdays, because of different care concerns at home! But as I read all of your posts and see that there are so many others in the same boat as I am, makes me not feel so bad, and even perk up a little. I am sorry that we all have to go through this… either as a CALS or a PALS, but at least there is some understanding and empathy here.
Take care. Mary