My husband cares for his father with ALS full time. I didn't even realize it until this week but it's coming on 3 years of full time caregiving for us. We have never fought regularly, we've always been that couple that gets along. In fact, our marriage is so strong that we foolishly believed that's all we need to get through this. But now there is a distance between us, and that distance makes me feel insecure so I take things very personally, then we bicker and I cry, then I get mad at myself for being selfish and putting him through that while he's struggling so much. Why would I do that to someone I love that is going through something so big? How do you keep reminding yourself of the big picture in those little moments? How do you forgive yourself for the times you were already selfish? How do you make it up to them? Is it right to feel like he owes me anything right now? Shouldn't I just understand he's doing what he can? Why doesn't that feel like enough lately? Does it go back when the caregiving is over?
Honestly, I can see how caregiving can strain a marriage and break it. Even though I love my husband, and his parents, just as much as I love my own kids, I feel angry and let down sometimes. Yet I am aware of what is causing those feelings, and I know it is not him or me, it is the illness itself and nothing else that is doing this to us. So what do you do with that anger and insecurity? I can't bottle it up, he sees it. I can't express it because I feel a responsibility to be easy to deal with right now, ironically that makes me less easy to deal with.
Can anyone relate?
Your husband is probably on "E" and feeling overwhelmed and feeling like he signed on for more than he bargained for and on top of it is watching his parent deteriorate day after day. He may not have anything left to give you at this point, so don't be alarmed if he initially blows up at the mere mention that you have some issues. Really think about what and how you are going to bring all of this up. Kindly remind him that after 3 years of selflessly caring for his dad, there is no shame in re-evaluating the situation and coming up with a plan B if needed.
You have a very heavy heart right now. I truly appreciate your complete honesty and I certainly understand all of your questions and concerns.
Everyone relates to these situations in their own way, so there is no one particular way to respond.
We aren’t failing at not being supportive to those in need. We are often lost and confused during these times. Most of us don’t have proper frames of references to help guide us. So, we end up not knowing which direction to take.
I found wonderful comfort and direction on this forum and I know that you will too. In my case, I had the opposite issue. It was my mom that was in need of care. My husband did his very best to support me but it was completely natural for him to feel his feelings of frustration, just as you do.
All you can do is calmly speak to your husband about your concerns. Use a mediator such as a therapist if you feel that it would help the two of you to stay focused and find solutions to this heartache in your lives.
Wishing you peace during this challenging time.
Based on my 10 years of caregiving experience, identifying reliable ways to reenergize yourself is essential. Exercise, pleasurable pastimes, times with your friends...anything that you know will rebuild your love of life and reserves of spirit. The pandemic is confining, but things are getting better. What can you do that is just for you? With renewed emotional and physical energy, you can better provide support to your husband.
Also, consider talking to a therapist. Having a place to vent and get an professional's support can be very helpful. It also means you're not taking the raw emotion into interactions with your husband.
It may also be possible to get more support for him with other helpers who could share the load. Has he considered that? This role must be exhausting for him. Consider a therapist just for him, also.
It sounds like you have a solid, loving relationship with your husband. That is precious. Finding ways to take care of each of you will keep the partnership strong.
Finally, we all have times when life seems to be all about obligation. We get low, angry, and resentful. One of the hardest things I've done in the past few years is to make a commitment not to hold onto resentment and anger. I do acknowledge the feeling(s) and talk about them (to a therapist or good friend) and then I find I feel better. Ultimately, there are things I cannot control. Anger and resentment eat at me and make me feel worse. So, gradually, I have found ways to recast my thoughts. For example, instead of "why doesn't his son do more to help me out?" -- I have, through repetition, decided to think "it is my problem to solve." This comes to my final point. If, in my thoughts, I see myself as a victim, then that is how I will feel and act.
I hope I have been helpful and not preachy here. There is nothing easy about what you and your husband are experiencing. I have the utmost compassion for you both.
We have moved on and on and on to a kind of amicable quietude.
It will go back to what it gloriously was in my memory when it is all over.
I am reading your feeling . I do relate to what you are experiencing. Because I see the strain, painful suffering as I watch my BF became a caregiver for his Mom. Whom he loves;and that’s not the issue for me at all.
Mom dementia has progressed, therefore my BF and I are having major problems In our relationship.
This is age progress disease is a” manipulator “Caregiver will eventually loose there lives I watch my BF go from a sweet loving,patience man. Excited to see me and to spend quality time with only HIM AND I. To a distance,and sometimes cold to me, and my feeling.
Mom appears only to be the “only” one important in his life.
So you pray,and seek more ways that make you satisfy. I known happiness is a inside job(individual) but do be aware this disease loves to control the caregiver with guilty.
I am getting stronger,excepting things as they are but still believing for a change in our relationship.
Communication and prayer to God for help is the key for strengthening the relationship.
Its a ongoing task;but🙏🏾.
Hold on there is much help out there SEEK for it!
Therefore I hear you loud and clear. Keep busy with all things You love to do. Keep smiling for it’ a”worketh like medicine”😅.
This is a supportive web site stay with it.okay!
This would give you both help, support and a bit of time for yourselves.
It would also eliminate having to buy supplies as most of the supplies you need would be provided and delivered as well as medications.
AND if FIL is a Veteran there is a good possibility that the VA would also provide help. And depending on where and when he served this could t a LOT of help or a little. If he is a Veteran contact your local Veterans Assistance Commission and ask if they can verify what might be his "service connected disability".
The average time line for ALS, according to lookup, is 2-5 years, although it does indicate some live longer (Hawking lived 50 years with his DX, but he is very likely a big outlier.) It will be a matter of time before FIL passes on, and it may be especially hard on your husband when he does pass.
Certainly when someone is providing full time care for another one can feel "left out." Rather than resent his time spent with his father, could you be of assistance in that care? If not, then you need to find ways to occupy your own time when he is providing care, either with friends or family and "hobbies." Meanwhile provide what he needs that he might be overlooking while providing care for his father. He also needs emotional support.
Something that might be of use is what others have suggested - finding outside help to take some of the load off of your husband. If you can get him to agree to some outside help, find little ways to spend that time together. It's tough while we are "cooped" up due to the virus, but even going for a walk or a drive could help. Plan special meals, maybe a candlelight dinner, for him when he comes home from a long stressful day providing care. Providing emotional and physical support to him benefits YOU as well!
I think you have to figure out why you are angry. Are you really angry at others in the family who could be helping, but don't? Are you angry because you spend little time with him and this was a total change in your lives? When you lash out at him, did it have something to do with what just happened - or a build up of something days ago. Then figure out some ways to work with it. Can some home health come in to relieve him? Any family members who could give both of you some time away with only you, him, and the kids. Travel is coming back again - maybe you could arrange a little trip and start thinking about coverage for the parent and tell him that he needs a break and you'd like to spend some alone time with him. Couldn't hurt.
Of course you feel distance because he is spending a lot of time dealing with someone else. But this situation shouldn't create insecurity. Try to think of insecurity in a marriage as - he's not working to help pay the bills, he's gone for periods of time with sketchy excuses, etc. At least what you are watching shows you what he would do should you need the help. Try to think before you speak - is it a real issue worth an argument or only a little bit of anger at the moment that is going to make this topic I want to bring up sound much worse than it is.
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