MS Caregiver Tips?

[CGWest]

My partner has MS and struggles with a lot of things; sleep (of course), pain in her feet (really bad neuropathy), pain in her back, and has massive fatigue just to name a few. I'm facing difficulty as a caregiver because these symptoms impact her mood greatly. I struggle with how to separate her horrible mood swings and negativity from my day-to-day activities and attempts to live a happy, healthy, normal life while supporting us financially and being a care-giver. I find it difficult to work and focus with all of this going on as well. Do you have any advisories about how to best manage this? It seems unhealthy to be detached when negative moods flair, so I'm looking for other options. Talking to her only makes things worse.

[Xvettech]

hi! As someone with MS I totally understand what she’s going through. I understand that it’s hard for you, but it’s probably even more frustrating and hard for her. There is stuff happening and we can’t control it. It’s extremely hard To accept that! Stuff we learned when we were infants doesn’t go that way for us anymore. That’s hard for us to accept and figure out how to get around it I know it’s hard for you too! I know. I get it. I thank you for her as you’re trying to figure this out. Worst thing is it constantly changes! All I can say is try to stay positive! I was recently in hospital and all the staff were super cheery and nice. Their disposition made me happier. Try to be that way for her! It rubs off! lol!

[CGWest in reply to Xvettech]

Thank you for responding. I will continue to try and remain positive in the face of a constant barrage of negative comments about myself, the work I'm doing and the people that I surround myself with. I do understand (as much as possible) the difficulty that lack of control, consistency in symptoms and uncertainty brings. I guess, I'm looking for some support for myself too, but I do get that it's not really about me at all, it's about the sickness and all that it brings. I have said before, that all three of us are partners, it's not just the two of us.

[Xvettech in reply to CGWest]

So true! I am sorry for all!

[NorasMom]

Take care of yourself first! It sounds counter-productive, but if you're not happy and healthy then you won't be any good to either of you. I have bad days when I just want to be left alone in my misery, but I don't get the mood swings that have me lashing out at people.

Maybe I'm being too harsh, but I'd just walk away when she gets mean. Make sure that she's as comfortable as possible (like, don't leave her laying in the middle of the kitchen floor), but then just let her know that she's being hurtful and you're doing your best, then just walk away. Go to a different room or take an actual walk. Do something that refreshes you. It might be time to suggest a therapist or medications if she's coping poorly.

Sometimes the pain and discomfort are terrifying, but driving away our primary means of support is not the way to go.

[falalalala in reply to NorasMom]

I couldn't agree with you more.

[Sweetheartonvdayl in reply to NorasMom]

So agree!

[green244]

As a caregiver I totally understand what you are feeling. My husband was pretty happy up until he couldn’t walk anymore and then he became somewhat gloomy. I always feel like being cheerful is rubbing it in his face that I can still be happy while he is miserable. It’s good to know from one of the responses that cheerful is the way to go. His moods really drag me down, though. Recently, a book was recommended to me to help me relate to one of my adult children who has become withdrawn and I found it useful for communicating with my husband as well. It’s called Nonviolent Communication and the author is Marshall Rosenberg. Old book and not very expensive. It’s a quick read. The key point is to show that you understand what the other person is feeling and make sure they see that you do understand. Then, communicate what you are feeling and own your feelings (don’t put blame on her for your feelings). Then, you can try to work on a compromise where you both state one thing that you would like the other person to do that would help you each feel better. The most interesting and difficult part for me was analyzing why I feel the way I do.

[CatsandCars]

You know your own situation best, and if I've gotten the wrong impression I hope you'll forgive me. But while having awful pain, crushing fatigue, and having to adjust to not being able to do things you used to do is really freaking hard, it's not a license to constantly criticize or belittle your partner. We're all human, and have to be forgiven for occasionally losing our cool and snapping at one another. But afterwards we should apologize and attempt to be civil. Yes, MS can cause mood changes in some people, but I think there are ways to treat that. I think you should talk to a therapist yourself, with the goal of getting her to own her issues and see a professional or two herself. Most behavioral health issues respond best to therapy and medication. I'm sure she sees plenty of doctors; this is really not that different. It will be difficult, but the more you hold things in and do more than your share without any appreciation, the more you are risking having serious mental health issues yourself. Life with an MS patient is going to be tough, but life is short. It shouldn't be miserable the whole time.

[Sweetheartonvdayl in reply to CatsandCars]

Agreed!

[mathematics]

My husband has MS and has had it since 2011. I know exactly what you mean and recognise what a hard time you are having. Has your wife got any hobbies or interests of her own even though she might not be so good at doing things now it can help even if it is frustrating for her as she cannot do them as she used to. Even googling on the internet looking at ideas for her hobbies, even if the idea might be a bit beyond what she can do, can help. My husband loved carpentry as he is a time served carpenter and fishing and he spends time surfing the net watching projects on you tube or programs, even if he has been unable to go fishing for years now. He cannot do things the same anymore, which he has found difficult to come to terms with and frustrating. Everybody has given good advice and all the best in dealing with what is a difficult situation.

[Kit10]

Do your partner's problems include difficulties speaking? I mean, speaking slowly or quietly, slurred speech, running out of breath, difficulty finding the right word? If so she may sometimes sound more negative, short-tempered or impolite than she intends. I have been there and it increases my frustration to have my tone of voice criticized when I'm struggling to talk at all. Even worse if someone walks away when I'm desperately trying to tell them something.

[Greentime]

To me it sounds like verbal and/or emotional abuse. I think there is a lot of good advice here. My two cents is to reflect on it all and then on how to change the communication pattern. Your wife is probably feeling out of control and so she is trying to control something in her life....you! It is the disease she is really angry with, don't allow her to direct all that anger at you. This could be a healthier team effort.

[1yoyo]

Pain medication special for the nerves.

there is also medication for mood swings like duloxetine it works wonders

[CGWest]

Thank you all for your posts and advisories. Sometimes the mood-swings can get the better of me, but there is always a way to come back together with honest communication, which does happen. It can feel a little abusive at times, but I think it's more of a panic driven anxiety that causes outbursts of horrible feelings. I do need to make sure I have the space to come back to myself with and she provides that to me with zero guilt. Overall, I think we do have a good relationship, with some bumpy hills and the challenges that come from chronic pain and illness. Thank you again.

[anaishunter]

I understand your frustration. I have MS and one of the hardest things to make peace with is that every day is different and you don't know when you wake up what the day might be made of.

For my husband (he's not a caregiver. I'm still independent), it's figuring out what I can do and can't do. Because I can do almost everything but not a lot in one day.

It took him a lot of time to understand that loud TV is hard on me, I can't go to concerts with him anymore, I do better if the house is in order so I don't trip over things on the ground.

Ms requires courage and patience on both sides, patient and caregiver. But you're on the right forum to get tips on how to best handle.