anyone here angry at their spouse for having als?

[dianan]

I think the most difficult thing to deal with, with my mom having als, is the way my dad treats her. She says he hasn't shown any kind of affection towards her--no kiss--since she got sick two years ago. She feels like he has broken his marriage vows--"in sickness or in health". He constantly tells her she needs to keep exercising every day, all day, in order to get her muscles back. I agree that exercise is good--use it or lose it--but my dad is not encouraging. He is so grumpy about it all the time.

I know it must be hard on him to have to take care of his wife--dress her, bath her, help her go to the bathroom--but I think if he were to show love towards her, instead of anger, she would probably be doing a lot better.

He started going to counseling--once. Then he said he didn't need it. My mom was going to live with my aunt, but he didn't want her to. I don't understand why he treats her like this if he loves her. I imagine he is angry at the disease and taking it out on her. My mom thinks because she took care of him for so long that he is being selfish and wants to be taken care of instead of being the one to care for someone else. I don't know what to say to help him see what he is doing. My sister has talked to him about being positive, but it only helped for a little bit.

My husband gets so angry at my dad for the way he treats her. He says he would never be that way towards me if I got ALS. Is it selfishness or anger that makes my dad be the way he is? I keep telling my mom she needs to get better so she can kick his butt for all that he's done to her. But at the same time, he has done so much FOR her, too.

I want to talk to my dad, but I don't know how. We were never close and only recently I've actually hugged him goodbye. Mostly because I am afraid each time I see him will be my last. Suicide runs in our family. His sister killed herself when she was in her early 20's. His brother drank himself to death just a few years ago. He lost a brother that he was really close to when he was a kid. He gets stressed and depressed easily, so this disease has increased that depression. He has talked about shooting himself to others. I think it's a cry for help. I've tried helping out at the house. Whenever I go there, I get my mom what she needs, I cook and clean, and my dad appreciates it. I've asked other family members to help out and they agreed to, but when they go to the house, all they do is talk. I've talked to my dad about getting someone trained to come to the house to help care for her and he says that mom doesn't want anyone to help her but him. She's embarrassed. My aunt was going to get someone to help out for about an hour or two each day, but charged $700 a month. My parents only have $600 a month income--and no food stamps. So then my aunt was going to get someone to help out for free if she signed my mom up for hospice. My mom was so hurt by that because she took it as my aunt believed she only had 6 months to live. This was about a year ago.

Sorry this is so long-winded. I've had a lot to unload for a while. I'm glad I can come here to talk.

 

[Miss]

I am so sorry your family is going through this. this disease is such a monster.

First, your mother is not going to get better. In fact, do not let her exercise to exhaustion. This can actually damage her muscles faster. Your dad probably needs a good anti-depressant and councelling to deal with this disease. It is a bear. As for hospice, ALS is a little different than most diseases. You can be on hospice longer than six months. Try talking to your mom. It could get her the help she and your dad need. If he get some help, he might be more relaxed and the affection might return.

Take care and know that you have found the right place for asking questions and talking!

 

[cervus]

Missy's right. Your mum isn't going to get better and exercise is not a good thing in the case of ALS. Range of motion exercises are good but not actually "working out". It seems that your dad needs to educate himself a little more on the disease so as not to expect so much from your mum. Maybe once he knows more about this awful disease, he'll accept more help. And the hospice comment was good. Their income isn't very high but this must mean there is some kind of financial or medical help for them. A good discussion with hospice sounds like a great idea. Hopefully you will find somebody that is familiar with ALS. Keep being there for your mum and dad, as much as possible. They need all the physical and emotional help they can get. I'm so sorry you're all in this terrible predicament. Yasmin

 

[dianan]

How do I edit this post? Just in case my dad gets on here, I don't want him knowing what I put on here. I'd like to make it a little less TMO.

 

[kiwisally]

At the bottom of a post (of yours) is a blue edit key, hit it.

 

[dianan]

Hmm, for some reason it won't let me edit my posts.

 

[caldona]

It doesn't make sense that they only get $600 a month my brother in law doesn't get much Social Security but he gets SSI which makes it a little over $700 plus food stamps I thought everyone got this Your mom should be on disability and people on SSI get home care paid for, the least amount of hours you get is two hours.

 

[notgivnup]

You need to ask AL , moderator to delete if he can, you can not do it.

 

[lgelb]

Diana, I hope you will find a way to talk to your dad and mom about what you feel and fear. After all, the time to get this done may be shorter than you know.

Since you are not close to your dad, can you phrase it as "I'm afraid that...I'm worried..."? And try to make positive statements about what you envision for your family, like "I am hoping..." "It would be great if..." You might get your sister to reinforce what you say.

I would not get in the middle of your parent's relationship, but can you help your mom make the same kind of statements? Can she ask him about couples' therapy? Going out as a family group somewhere relatively non-strenuous like a garden, outdoor event or museum w/ her wheelchair?

Besides antidepressants, thinking about/being with the family as a whole rather than being in a siege waiting for death with your mom may help your dad regain some perspective, and seeing more of all of you certainly helps your mom.

You might also ask your dad's doc if s/he has any suggestions. He could even be physically ill himself, apart from any mood issues that illness might exacerbate. I would also reach out to any of his friends. He may feel that his social life is over. Maybe he needs a respite and refocus, whether he puts it that way or not. Counting up the points at this late date probably isn't productive -- in many marriages, one ends up way more on the plus side of the ledger than the other -- but doing something about the damage that the perceived ledger causes is still possible.

--Laurie

 

[HelenL]

If your Mom worked out of the house for any length of time, she should be getting SSI disability. I'm not to the point of needing hospice by any means, but fully intend to get is when I need it. Please show this forum to your Mom and Dad (after editing of course) so they can find out many people go on hospice for years. This isn't cancer. I think you had an earlier post where I asked if your parents were going to an ALS clinic or not... they should be. Talk to your Mom about getting some helpers in to help out, point out to your Mom that your Dad isn't just a caregiver, he needs a chance to be a husband as well. Getting a break from caregiving may help that.

Regarding editing your posts: I think that you don't have enough postings yet? It may be that you need 15 or something like that. Just don't let your Dad see it until you get it edited! I understand what you are saying about depression and problems in your family... alcoholism has killed more members of my husband's family than I care to think about for my kids' sake, and depression and anxiety run in mine. We all have our life challenges, but please, talk to Dad about getting some meds to help him out. It's not wrong to need help! Good luck.

 

[dianan]

It doesn't make sense that they only get $600 a month my brother in law doesn't get much Social Security but he gets SSI which makes it a little over $700 plus food stamps I thought everyone got this Your mom should be on disability and people on SSI get home care paid for, the least amount of hours you get is two hours.

The $600 is for disability for my mom. They don't qualify for anything else because they own too much and have IRAs. My dad doesn't work because he's taking care of my mom. I've tried looking into having my dad get paid for taking care of her, but just came to a dead end.

 

[dianan]

Thanks everyone for your input. I will look into all of this.

 

[caldona]

I have heard that people can get paid for taking care of their spouses but I understand thats paid for by getting Medicaid but I may be wrong.

 

[dianan]

Ah, that could be why it was the dead end. My parents don't want to get medicaid because they fear getting their house taken away. My mom is on medicare. Or maybe it's the other way around. I don't remember.

 

[brooksea]

Does your mother go to an ALS clinic? If so, they should have a social worker that can help navigate what is available, as far as in home care. Otherwise, I would really suggest hospice/palliative care. Medicare will pay for this and your parents should have no out of pocket. You will most likely need to contact an agency yourself, explain the situation and have someone come to their home to create a plan to help your mother and father. Perhaps if the agency has a heads up, they can call it palliative care instead of hospice care. You will still need a doc's written order. That shouldn't be hard.

I wish I had done this for my husband (and myself) long before I finally asked the doc to write the order...

Good luck to y'all.