Issues

[nancyg]

My husband and I have been married for 32 years. I wish I could tell you we have the "perfect" marriage, but I am a realist and know that isn't the case. What I can tell you is that I love him and never want to live without him. He has coped with PLS rather well, staying busy and positive and strong. It's been over 4 years of constant doc visits and testing and medications, adjusting and changing...all a lot to deal with. Lately he has been so irritable and I understand this, but it's directed at me. Nothing I say or do is the right thing. I can do nothing right. It's almost like he is pushing me away to make sure I don't run away. I find this so frustrating. WE have enough to deal with, why add one more thing to an already full plate? Why look for problems where there are none? I am being patient, I am trying to reassure yes, it's not sinking in. For those of you with this insane disease, did you go through this? For the family members, how did you deal with this? I just want to scream, nothing in our lives is okay. The one thing that I thought we had going for us was a mutual love and respect that guaranteed that we would work as a team and face this, as we have so many things in life, together. I am SHOCKED that we are at this place where he is questioning everything, and I do mean everything. He has even questioned my spending time with our grandchildren, saying I am trying to replace and empty part of my life with them because I am not happy with him. My grandchildren are the only enjoyment that I have in life. He's making me feel guilty for spending time with them. I understand that this is his illness, his pain, his frustration, his anger, his fear. I keep trying to reassure him. I keep being patient. I keep trying to do what I think he needs me to do. What I really want to do is stand on the roof and yell at the top of my lungs..."this has hurt my life too, I am a person, I have wants and plans and dreams. This awful disease has stopeed my dreams too. Isn't that enough? Just when you think IT can't take one more thing, it does. This was just something I didn't expect. I can prepare for some things, this one I didn't see coming. Life sure sucks doesn't it? We tried to plan it out so well. Now we are just trying to deal with what comes up. I am not winning this one. Not even close.

 

[olly]

hi nancy,so sorry to hear of your troubles.
please rest assure its nothing you are doing wrong in fact it seems you are bending over backwards to be supportive.

losing ones mobility and control over life is frustrating to say the least and only someone with a disabling illness can truly understand this.
even after 12/13yrs i get days when life gets me down,can't do things i want to or need to do (my 23yr old son gets the brunt of it).
depression plays a big part in chronic illness and i feel that could be your husbands problem.
maybe get him to see his gp for a chat and they could prescribe something to lift his mood.

look on the caregivers forum as there is so much wonderful advice there you may find helpfull...........all the caregivers here are so dedicated and put up with so much.........you are all truly inspirational.

 

[Tokahfang]

He certainly sounds depressed!

It's always funny to me that when people meet my husband and I, they see my power wheelchair and have pity on how hard it must be for us, but it's not my disability that rules our days... it's his.

My husband has major depression and we have a few friends with moderate depression, so I have a lot of experience with it. People with depression who are kinda making it strike out first at the people they love and trust the most. Though I didn't feel this way when he went through his worst bout, I now know that the very fact that he was acting so badly towards me was a sign of how important I was in his life. When we have bad moments now, I try to remind myself of that. It's his very trust that I won't desert him that causes him to take out his anger and frustration on me verbally, so he can go back to work the next day and try to keep his job.

The most important thing I learned is that the things he and our other depressed friends complain about are very rarely the cause of their frustration and upset. Fixing those things will not make the situation better. Those things are just the excuses his brain attaches to the dark feelings and chemical things happening up there. Exercise does help, meds help, good sleep helps, and reducing overall stress helps. Outings that are basically enjoyable and don't overdo it help, but those that drag on past his tolerance are counterproductive.

For us, our day to day approach to helping him live with his depression are not much different than our approach to me living with my UMND. After the docs have done what they can, it's essentially a practical problem. What do we really need to get done, and how are we going to do it? Some things, considered necessary by other couples, are just out of our resource budget and we have to write them off. Pushing me past my physical ability doesn't help, I'll just have less ability for days later, and pushing him past his mental ability makes him first incompetent, then sleep uncontrollably, and makes tommorow a harder prospect than it was going to be before.

He first started showing severe symptoms in 2000ish, so we've been working through this thing together for more than a decade. Feel free to PM if you need a sympathetic ear.

 

[johnnyliverpool1]

carers in my view have a special and exstreamly tough job of it....look after yourself, keep fit and mentally well...take breaks away from caring and refresh yourself, that will make u a good and able carer....u r no good to anyone if u r stressed....dificulct to do i know ,,,,and throw the feeling of guilt out of the window...then hubbies problems u can handle better....in other words, look after yourself first and your hubby second and he will get first class care..best to you...johnny.

 

[AKmom]

You say that he has delt with his pls rather well and positively, and that it is resently that he has been angry and somewhat unreasonable. Has there been a recent change in his meds? Is he taking na rc otic type meds such as vi co din or no rco for pain? Sometimes these meds can cause anger outbusts (i am much more irritable when I take them, thus I do not take them as much). Otherwise, I think Becki is correct about him possibly being depressed. Have you spoken to him about your feelings in a time that he is not upset? It wasn't until my hubby pointed out my moodiness after taking meds, that I realised it and now I can identify when I am irrational anger and I put myself in time out.

Good suggestions about talking to the CALS.

 

[HelenL]

We always hurt the ones we love... great advice from the others here.

Remind him that they're his grandchildren too, and yes, you do need a break from time to time.

Can you reach out to some of his friends and arrange a time once or twice a week where one of them is scheduled to stop by and play cards, cribbage, chess, watch a movie? Anything that he used to be interested in. My stepDad (not ALS) is in a wheelchair and his cribbage friends from chuch come over every Friday, and he goes to the senior center every Tuesday for more.

 

[nancyg]

Thanks everyone for your response. They have changed his meds and yes, a pain pill was added. Worth checking into for sure. I guess I just hit the wall the day I posted, didn't mean to sound like such a boob when all I have to do is deal with "things" and the illness isn't even mine. I admire each and every one of you, your outlook and strength inspire us all. After raising two kids and we actively help to raise our two grandchildren, I say that life sure isn't what you plan, it's how you deal with what comes up. Some days I definately deal better than others. Our daughter was to get married in May and cancelled her wedding a month before that, after we spent SOOO much money. Much to our surprise she still got married in May, just to someone else. We've been dealing with that on top of all of this and you are correct, stress does ugly things to people. I guess I will just wait for it to all calm down, which I am sure it will eventually. My thoughts and prayers are with you all. xo