Caregiver stress – How does the family recover and go on?

[savvietva]

Hi everyone, I just joined and wanted to introduce myself. My 81-year old father was diagnosed with ALS in Feb 09, and the disease has progressed rapidly. Within a year, he went from driving to being essentially paralyzed from the neck down. Speech and swallowing get more difficult on a daily basis. Though he has a feeding tube, he seems to have decided not to use it. He can still speak, but only our immediate family understands and he has no interest in tech aids. My mother is and has been since the beginning, both physically and mentally unable to accept and deal with the situation. OK, honestly, she’s become a raving alcoholic, not to mention a really mean drunk. Luckily, my brother and I are local. For the first 6 months, I was primary caregiver, but my dad is over a foot taller than me (no osteoporosis or bone loss in our family) and my brother soon had to take over the lifting and moving, even with the mechanical assistances we installed. But we both have kids, and soon needed help. We have a bevy of aids (Dad’s harem) Monday through Friday, and my brother does nighttime duty. I have weekend duty. I have come to terms (on most days) with the disease, and the fact that my father will die, probably in the coming months. But I am watching my family fall apart and I have no idea how to stop it. My mother sleeps the day away and comes out at night to take out her frustrations on my brother, who then retreats with his Budweiser or takes his frustrations out on me (verbally). Most days I don’t mind, but the truth is, our family is not doing so well in the coping strategies. I’d like to blame it all on my mother (don’t misunderstand me, we do love her – accept when she’s drinking), but I’m not even convinced that the situation would be any different if she were sober. I was wondering if anyone had experienced similar situations and how they coped? The trusty family meeting failed miserably. Positive attitude and humor haven’t brought about any results. I am open to suggestions, or just someone to talk to that won’t yell at me for failing to grasp the fact that life sucks and my dad is dying.

 

[jennbenn]

Welcome to the forum.

Wow you have a lot on your plate.
I am so sorry to hear about all this for you. You need some emotional support you are carrying a huge load.

I dont have any advice but know that we are here for you every step of this rocky road

I have found lots understandin here and you will too.

 

[Blubear]

Whew! savvieta, well first off, I am glad you found us. Welcome to our forum. I read your post and had to go and smoke a cigarette and try to digest what you are dealing with hun. First of all, I am so sorry that your family is falling apart right now. There is help out there, and YOU need it and so does dad. Have you contacted the local ALS assoc? They can send out a social worker to access your situation and try to give you some desperately needed advice/help. Secondly, I have had to deal with addicts in my time as well. Your moms disease is in full bloom, and your brother wont be far from her soon unless they can get a grip on their own diseases. It is genetic. I would strongly suggest for you sweetie to get to an AL-ANON meeting ASAP so that you can try and find a way to cope with all the sickness around you. Third, do you have any extended family that could help you perform an intervention for mom? She needs treatment. A lot of people dont see alcoholism as a disease, but it is, and any type of medical insurance will cover that. You trying to deal with taking care of a loved one with ALS is bad enough, but you yourself are already sick with having to deal with the other disease going on around you. YOU need to be well in order to give your dad the attention he truly needs. Ya gotta take care of #1 first in order to take care of others. Have you seen the show "Intervention"? It is on every Monday 5pm and 6pm on the A & E channel. There is commercials during the show that give an 800 number to call if your loved one is dealing with any form of addiction. Even maybe contact the show? I know they get lots of requests, but yours is a dire case and maybe they can help you? My heart breaks for you and your dad. Know that at least your moms disease is treatable. Things can get better, WITH HELP! Please know that I am sending you understanding hugs and if you need to talk just click my name blubear and send me a message!
Hang in there and keep us posted!
Hugs, Kari

 

[Just J]

Savvieta, so sorry you are going through all of this at once! Kari's advise on AA is good, as this can be treated. You mentioned a family meeting didn't go well have you considered family counseling? It is so much (too much) to deal with and you cannot do it alone. I am sure your brother could use some counseling as well. Having a social worker access the situation is great advise. Good luck with all of this and please keep us posted.

 

[Twinsmom]

Dear Savvieta,

You do have a boat load of life happening right now! Kari's advice is SPOT ON! I've also lived with addiction in my family, and Alanon will give you some tools to be able to set some healthy boundaries and be able to separate your mom (and possibly your brother) from the disease, and be able to have some coping skills to keep YOU healthy and strong! A mean drunk is no fun...my prayers to you for strength and courage! It takes a great deal of courage to not enable those you love-especially when it's so easy to make excuses and "blame" something else.

One of the hardest things I've ever had to do, was to change MY response to the chaos and crazy this disease put me in. AND, it was the only way to establish boundaries, and promote change. Most of the change, was in me, though-and that's one of the things Alanon will teach you. To change the things you can, accept the things you can't, and the wisdom to know the difference!

Prayers and Peace,

Melody

 

[indigosd]

Great counsel from the forum as usual! Mel, your suppose to be on a HOLIDAY in the SNOW not on the forum! lolol How old is your Mom? You mention that your Father is 81 so she must be older-in her 70's? Probably not much of a chance to change HER at this point. The only one that you can change is yourself-work on that and I would buy her enough etoh that she just passed out so I didn't need to deal with her! Yeah, I know that it isn't therapeutic but it sounds like this is survival mode! If it gets to scary or ABUSIVE call in Adult Protective Services. sending you hugs and prayers for peace this weekend! Kay Marie

 

[savvietva]

Thank you all for your advice and support. Kari, My original post didn’t make it clear that my mom’s drinking began long before the ALS diagnosis. My brother and I once suggested an intervention, and my dad immediately vetoed that idea. And I think we are beyond intervention assistance now. Not only would it REALLY upset my dad (who doesn’t need any more stress and frustration) I do not think my mom would survive, physically or mentally. Though she denies it and refuses to see a doctor, she has emphysema and probably weighs less than 80 lbs. She is overwhelmed with pain and fear, and uses alcohol to drink herself to sleep at night, and I personally think, she wants (is trying) to die before my dad. I don’t think she realizes (remembers) just how nasty she is when drunk, and I’ve considered taping her at night to replay the next morning, but I’ve never done it, because I don’t think she can change, at this stage in her life.
My family, following my dad’s wishes, has been a great enabler. (I tease my kids that when I’m old they should prepare to serve me Irish coffees in the morning and frozen margaritas in the evening.) It’s embarrassing to admit, but well, I AM a counselor – or was before I left my job to take care of my dad. I know it is an illness, but my dad believes my mom has the right (choice) to seek help or not, and I let it be. In the past, he just turned off his hearing aid after dinner, but he can’t do that now, so maybe he’s rethinking his position, but if so, he hasn’t verbalized it. OK, he can’t really talk now, but he does make his position clear when my brother and I lose it and stand up to her ravings.
Kari, I will definitely follow your advice and seek out an alanon meeting. In all the chaos, I forgot about that option. I cannot change my mom, but I definitely need to figure out how to help my dad, and still establish some boundaries.
I wish I could get my brother to go, but that will not happen anytime soon. The biggest burden lies on his shoulders and I can see what the stress is doing to him, though he refuses to change the situation. He’s determined that my father will have the comfort of dying in his own home, and since we keep losing our evening care workers (compliments of mom’s tongue lashings), only my brother is available to do the lifting.
I have already established certain boundaries to protect my children from my mom’s after dinner speeches, and while my brother understands that (deep down), he is still resentful that he does more than me, when it comes to evening work. I wonder if our relationship will truly recover from all this stress. Do caregivers forgive and forget when the end finally comes?

 

[cris]

savvietva..Hello I've been reading your posts and all the responses. I think they are all right. I'm sorry I don't have any experience dealing w/ addiction. But they are all right, you should seek help for yourself so you don't end up on the same road they are on.

Just know that we are all here to help as much as we can. We will even listen to your venting. We all do it from time to time.

The boundaries sound like a good idea... Is there any way you can relieve your bro after the evening lifting is done? Once Dad is in bed maybe trade places for the evening? It doesn't sound pleasant but might give him a breather too.

We are sending our hugs and prayers.....c

 

[Blubear]

Hi savvieta, Well I went out and checked on some more advice about your really tough situation. Treatment for mom is still the number 1 thing to do. I know that sounds huge right now, and especially with her condition and age. But, they have really good treatment facilities that will monitor her every minute, and will adhere to her health needs as well. They would possibly get her on some anti-depressants, and for sure get her some much needed counseling. (along with the rest of your family) Because of her ailing health, and her being so self destructive you should become her legal guardian. Its not just the alcoholism that is killing her, her mental state isnt well enough to make her own decisions about her own care. I had an aunt who just passed away a month ago. She was a mean and nasty drunk. We were asked by her kids to try and find some memory of her that we treasured, as they were struggling with it as well. I couldn't come up with anything. The kids were able to still pull of a nice funeral, and there were still tears. (she died of emphysema as well) Over time you will be able to forgive, but not forget. But the anger and frustration will eventually subside and just become a memory. I know you said you were a counselor. Counselors need help too! I always think about that cartoon I saw in my counselors office of 2 counselors talking to each other saying, "You're fine, how am I?" You have a tough tough load hun and I really feel for you. You will probably meet with some opposition from other family members if you try and get mom some help, but in the long run it is the best thing you can do for yourself, mom and dad. Please keep me posted on how you are doing, and how it goes at AL-ANON. They are on the internet and you just plug in your area and you will be able to find a meeting. So glad to hear that you are going to do that for yourself!
Big Hugs,
Kari

 

[Katie C]

Savvieta... oh honey, I've walked in those shoes. Elderly+alcoholic+COPD= a mommy who's not fun to deal with. My mom could clear out a house in the blink of an eye by pulling out the Old Crow at 2 pm. And would take off her oxygen to go outside to smoke. And yes.. treatment would be good for your mom as it would have been for mine, but for treatment to work the person needs to understand they NEED the treatment, and these ladies just ain't gonna walk that road. Honestly, when my mom was buried she had in her casket from her grandchildren: a pack of Salems, a bic lighter, a photo of her dog and an airline sized bottle of Canadian Mist. (CM became her drink of choice because the big bottle was plastic and easy to lift.)

Once you acknowledge that you're not gonna fix mom and can focus your energies on your dad and YOU it helps. Yup.. al anon or private counselling. (No cobblers child going shoeless, ok?!) My dad never felt Mom "needed help" either.. they are of a different generation than we are, and see life through a different lens. Try to take a step back and assess where you can bring in help for caring for your dad. ( I know.. easier said than done.. we hire people to help take care of mom and she fired them before they ever set foot in her house.)

Ultimately we made the decision that Mom was moving to assisted living. You and your family may need to make a similar choice, at least for your dad. Yup... she'll be angry and say lots of awful things. But you will know that you have made the best choices possible to assure both of their health and safety.

I seriously wish you the best. Hang in there!

 

[brooksea]

I don't really have any advice to add. Just wanted to say that my BIL taped my MIL several months before she died, as she was a drug addict (pills). He thought he could shame her into straightening up. All it did was drive her further into her depression and she ended up starving herself to death.

I wish you luck with all that you are having to deal with. Hopefully your brother will see that he is a necessary player in this horrid game of ALS.

 

[Blubear]

Hi again savvieta, well I talked with Katie C, and she is right, you cant get legal guardianship over mom, just dad. If mom is anything like my aunt and others I have known you are right, she will never go to treatment. I hope you were able to be given a break to go to an AL-ANON meeting this weekend. Also remember to contact your local ALSA and see if there is any help they can give you as well with sending out a social worker. Please keep us posted hun!
Hugs, Kari

 

[savvietva]

I apologize for vanishing on you, and wanted to give you a brief update. My father went into the hospital last week and died the next morning. I've been offline dealing with family and funeral arrangements. Memorial service is this Saturday, so I still have much to do. Thank you for you support and advice.

 

[paleshia]

so sorry for your loss, i pray for deep rest and peace for you now.

 

[Blubear]

Oh Savvieta, I am so so sorry for your loss hun! Please still come on here and let us know how you are doing okay!
Big sympathry HUGS!....Kari