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?

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Caregiving is the worst job EVER. Taking a loved one to appointments, doing all of their bills and paperwork, feeding, dressing, bathing, changing diapers, cleaning up poop, are just some of the duties.

You are bickering because you are both exhausted. You might have to get help with caregiving so that you can be a couple again.
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Reply to NinjaWarrior3

Hello Jamewide
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!
Helpful Answer (2)
Reply to Destinydrh

Imho, we are all mortal beings on this earth, which means that none of us are perfect persons. It is IMPERATIVE that you not be so hard on yourself and give yourself a break while your husband is caring for his father, who has a fatalistic disease as this, too, will end.
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Reply to Llamalover47

Caregiving is hard!

You deserve to have the attention of your spouse. The bickering and hard feelings are indicators that your FIL needs more people involved in his care, As caregivers, you need to take care of yourselves and your relationship: 7-9 hours of sleep every night, 3 healthy meals are reasonable pace, time off to care for individual health needs, and time off - individually and as a couple - doing things you enjoy (I call this "recharging" the caregiving batteries). If you don't care for yourselves and your relationship, you will both burn out and may damage your relationship permanently.
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Reply to Taarna

I can completely relate to how you feel. It is a tremendous burden to take care of some people with serious mental and behavioral needs and issues. Unless the caretaker is a pure saint, they will be affected by this over time and how much depends on the personality and responsibilities of the caretaker. I have a rule which I have learned the hard way will always work. When you find yourself in a situation, be it a job or a relationship or whatever, and it is beginning to have serious negative effects on you and those close to you - and you are slowly "sinking down", then you must stop and decide what is more important. Do you stay and suffer the consequences or do you make a break and find another solution (such as placement for the patient with the resulting problems). Sometimes the only answer is do what is hard but necessary and that means standing up and saying no more - enough is enough. You deserve to live a normal life and this way you will never have it.
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Reply to Riley2166

Just one woman's experience. There is no going back in reality.

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.
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Reply to Salisbury

Of course you feel angry and let down from time to time. So does he. You aren't spending the same amount of time with him as pre-caregiving role took over. I think the dynamic is different for everyone. Some will split up when this happens because one person was never willing to share that much time with others in the family. Think about how many couples split up even when the patient is their own child. It just happened to be too much for one of them.

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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Reply to my2cents

The first step to resolution is acknowledging there is an issue. As others have noted, there's no indication of anyone's age or work status. Are you both retired, since you indicate your husband is providing full time care? Does FIL live with you or you with him or is he in a facility?

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!
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Reply to disgustedtoo

Even though the two of you are married and you may be providing some of the care his dad requires, your husband feels that the weight of caring is mostly on his shoulders. Of course you can contribute to the caregiving, even, sometimes, offer more. But, nevertheless, your husband feels the onus of caregiving because it's his father. Are the two of you getting out at all- walks, dinners, socializing? Caregiving imposes on many caregivers a feeling of isolation and loss of identity and independence. Even though you are there with and for him, he may feel isolated from his previous activities, meeting with friends and socializing, for example. He may feel that, after these three years, he has lost is identity and now is “just dad's caregiver”. You, too, may have those same feelings. Reread Jamesj's post. Hire some help to give you some respite so the two of you can get out. Determine when, and if, his dad will need more care than the two of you can offer. My grandfather died of ALS. It is a heartbreaking disease to witness. Consider the health of the two of you. Do what you can for your father in law, but do what you must for yourselves.
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Reply to sjplegacy

I'm sure your husband didn't see his life turning out this way either.  I'm sure he would want your lives back the way they were before caregiving.  It does take it's toll on a person/family/marriage.  No ones age is mentioned so I don't know if your father in law is 65 or 90.  For me age and level of care needed would make a huge difference on the decision of placement.   I guess I have two questions....has your husband considered bringing in help for at least part of the day if not all day? Just so he has some time for himself and you.  Have you considered marriage counseling? Sometimes just talking through everything can help.  How you feel, how he feels, what the long term plan is for his father, etc... Has your husband determined a stage or point in his fathers disease where he will place him in a long term care facility or is this a situation where your husband plans on taking care of him until death? I could see where not having a plan or not knowing the plan could make you feel insecure.  If your husband says that he plans to care for him until the end, then that opens the segway for you to say that you would like some help brought in so that he can get a break from it all and so the two of you can have some husband and wife time together that has nothing to do with caregiving.  Taking a walk together, going out to lunch...etc.

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.
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Reply to Jamesj
sjplegacy May 13, 2021
Your's is an excellent response to Jamesj's post. Bringing in help, knowing your caregiving limits, establishing a plan, taking some time alone, all will help.
To provide him with support, you need energy and support for yourself, as well. It sounds like you are scraping bottom emotionally right now and don't have the emotional reserves to be the support to your husband you'd like to be.

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.
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Reply to Lifejourney

I also understand there is a huge strain on finances. When the stepdad dies, your husband WILL have to find a job and re-enter into the job market (unless he's disabled or retired already).

Caregiving is very hard, and it is very stressful. Eventually someone will have to change your stepdad's diapers (if not already) and manage his bowels (induce them at a regular basis), and feeding will be very long and difficult. Suffice it to say, Amyotrophic lateral sclerosis or Lou Gehrig's disease will leave him 100% crippled so you need to see an eldercare attorney (if not done already) regarding POA, estate planning, and see a funeral home regarding pre-paid arrangements which will save you a great deal of money (you get a discount for pre-paid and you won't be gouged due to grief, which funeral homes take advantage of).

You also need to organize ADVANCED DIRECTIVES because eventually you all have to decide on a feeding tube (A LOT of work to care for), vs. hospice and let them dehydrate to death because eventually he won't be able to swallow anymore. Someone needs to get with the FIL and fill out one of those papers. Put it in writing what he wants while he can.

**YOU NEED TO TALK ABOUT YOUR FEELINGS*** to your husband, or best friend, or at least see a counselor BECAUSE bottled up emotions can easily turn into depression and anger.
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Reply to cetude

With a diagnosis of ALs your FIL is eligible for Hospice. Have you considered this? You would have help several times a week with a CNA that comes in and helps bathe, dress and order supplies. You would also have the availability of Volunteers that can come in and sit with him and or help with some household chores. (they can not do "hands on" help though, and the time is typically limited to 4 hours)
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".
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Reply to Grandma1954

'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 - in our case, doing - so much.

I certainly can identify with this, even though my mother doesn't live with us and hasn't been diagnosed with dementia yet (she is getting very forgetful and ever less active, though). Since she moved to AL nearby four years ago, she has tried to take my husband over as a substitute husband/driver/PA/errand boy and it has caused serious strain in our relationship. I, the scapegoat child of a narcissistic mother, resent her obvious preference for him over me, her child, and then feel guilty about being so childish. He doesn't have the lifetime of emotional baggage with her that I have so is able to be more objective, but because he is a meek person who seems to need to be needed and always does more than his share at work or church, he gives in to her manipulations and enables her to become less and less independent, which drives me mad. I have actually thought of leaving him when things get really bad, which would be awful after 34 years, and we came to physical blows once before the pandemic released me from the burden of responsibility for her for a blissful seven months.

I know that no one who hasn't got a relationship like this with a parent with NPD can truly understand the horrible mixture of feelings we go though, but I fear my husband doesn't even try much, which does little for my already low self-esteem. He gets irritated with *me* for overreacting when Mum acts up and plays the innocent 'I'm pig in the middle and can't please both of you' card, which infuriates me even more as it was me he made marriage vows to, not my mum.

I have had a year of counselling and we may need couple counselling if my mother lives for years!
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Reply to helenb63
disgustedtoo May 13, 2021
"He doesn't have the lifetime of emotional baggage with her that I have so is able to be more objective..."

I can't tell you how many times staff would gush over how sweet my mother was and how much they loved having her there (MC)!! Sometimes I would just look at them and say, yeah, maybe, but you didn't grow up with her!!!

Thankfully my mother was fairly easy-going once she adjusted to being in the MC facility. Although she exhibited behaviors that were way out of norm for her, I was thankful that she WAS easy-going there! Most of the time she was okay even when I was there. Of course she had her moments, but they didn't happen often.

Sounds like your husband is the type who likes to resolve issues for others, whether at home, work or wherever. It's just who he is. I would be grateful that he does what he does for your mother, as it takes the load off of you! Also, if he can do this for her, more than likely he will do it for you as well, should you ever need any kind of care! Look at the bright side. There are too many out there who don't help at all and even go so far as to distance themselves from their spouse.

That doesn't really change the situation, but if you can change your outlook on this, it might make it easier to deal with it.
My husband and I had my parents live with us for about 7 years. Dad passed in year 2, but Mom only this Jan, He was the in home caregiver for them when he retired.. I am still working. My Mom could be a pistol, and I know it caused stress for us both, and some nights when I got home I got it from both sides. Lots of arguments from both.. but I can tell you in our case things are now better. So try to stay strong,, some of us do get our marriages back on track. Good luck.
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Reply to pamzimmrrt

Great question! I am afraid that all marriages will take a hit when faced with the heavy burden of caregiving.

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.
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Reply to NeedHelpWithMom

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