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Guilt and depression
My mom had two strokes June 3 and June 4. She spent 4 days in the hospital where she didn't wake up much the first 3 days. She lives with my brother and his 3 kids in Wisconsin and I live in Chicago Illinois. I have spent the last 3 months driving 5 hours back and fourth trying to help her. She spent all of June and all of July in a rehabilitation center because my brother works 12 to 16 hour days 6 days a week and there was no one to care for her at home. I took her to all her appointments and visited as much as I could. We got her on disability and into a care team program. They help with rides to all her appointments and meals on wheels and also set her up with life alert because she is home alone alot. My husband andI live on site where he works and they will not allow her to live with us. I struggle daily with the guilt that she is going through this alone. She says she feels like her body is now her prison and that she is broken. She feels like her life is over at age 66. She won't take any meds for depression, nor will she talk to a psychiatrist or join any support groups. I am afraid she will give up and I don't know how to fix this for her. My heart is broken.
AHAASAKatie, August 28, 2019 9:32am EST
Good morning, I am so sorry that this happened to your family. I can share the information we have for Stroke Caregiver Support. I understand that she is not willing to accept counseling or assistance, but I do think you might benefit from it. In some ways, I can relate to your situation. My father passed away this spring and I am now the sole adult responsible for my 79-year-old wheelchair-bound mother. While we are fortunate enough for Mom to have 24-hour caregivers, I take care of her bills, make medical decisions and will soon have POA for her.
However, she does not make the best health choices and I had to make a conscious decision to accept that I can not force her to do or be anything other than who she is. I have worked with a therapist to gain this level of peace wonder if you might be willing to talk with someone as well? Whatever you decide, please know that we are here for you both during this time. Best Katie
JeffB, August 28, 2019 12:52pm EST
Yeah, that’s a tough place to be in. My best friend, and adult father figure, Nick had a massive stroke that incapacitated the smartest man I have ever known nearly three years ago. At 65, he now lives in a home for old people (upwards of 70 and 80) in a neighborhood which is as remote to him physically as is walking to Alaska. I’ve been one of two financial POA’s for him while his two medical POA’s are totally absent and unhelpful. It’s been hard for a lot of us. Granted, he’s not my biological father or even adoptive father (which I have and he’s great). But it’s hard to cope with the guilt as you aptly state.
So, here’s how I do it. I can’t fix Nick. I can’t take his stroke away. He’s a whole new person now and the old person is gone forever. I am willing to help with emergencies, but I will no longer do his bills for him. I did however coach him through picking up some responsibilities where he could. Hoping that this would help to motivate him and give him a sense of purpose. Being a nerd, I automated at least 90% of his remaining billing. I got him subscriptions to a newspaper, got him setup with cable and moved him to my phone plan to save him some cash.
The next step we are taking, the other financial POA and myself that is, will be to check in with him this weekend and see where he got with his bill paying and mail homework which we clearly outlined in person and then repeatedly through the month. If he was successful then that is great, if he was not then we are going to hire a person to basically manage his medical expense and non-automatable billing.
I feel sad that this has happened to him. I mourned the loss of my 34+ year guide and constant friend. I supported him, and still do, where I can. But as with things like cancer, rattle snakes, heart attacks… things happen during our lives. That you are a caring force for your mother is enough. What I am doing for Nick is enough. It’s what we can do while maintaining and moving forward on our own paths. Yes, we need to mourn our loss. Nick, like your mom, seems incapable of mourning his own loss and not entirely emotionally functional anymore. And we’ve tried many avenues to help him seek support, but he does not respond to it like a healthy person would anymore.
One thing that helped me get to where I am today is that I went to a therapist and grieved this loss. It helped me to put boundaries up which made it easier for me to work within. Your situation is much more complicated in that this is your mother and you, no doubt, feel empathy for your brother’s position. But, my partner Eddie and I came home to Ohio from Texas. Mainly to be present as his father was dying from renal failure in 2014. Eddie has become the main source of help for his mother now as one of his sisters moved to Florida and the other has a lot of objectives she is working through and not capable of the level of attention that Eddie is. And that’s OK. I guess what I am hoping for you is that you find your peace with not just what happened to your mom, but also your place in this chapter of your relationship with her.
Try not to be so hard on yourself. Tall order, I get it. Help where you can. But be sure to take a page from the airplane attendants at the beginning of the flight when they tell you to never help another person put on the O2 mask without putting one on yourself first. You need to take care of yourself before you can start throwing assistance of any measure toward others.
I wish you peace of mind and luck through this process.
RebeccaLynn, August 28, 2019 1:10pm EST
Thank you Jeff. I joined this support group to get other caregivers perspective and one thing I have figured out is that we all are dealing with guilt and depression. After Mom had her stroke I saw that the Mom I knew was gone. It was as if she died from the stroke. Her first words after she started waking up on the 3rd day in the hospital was "Becky how am I suppose to live like this?" I told her "Mom you won't live like this, you will get therapy and heal" She has come along way in just 3 months. She can't see it though. PT, OT and her Nero doctor all say the strides she has made in such a short time is amazing. She says she doesn't see it or feel it. Her fatigue is so bad that just walking across the room exhausts her terribley. She was a person who got up at 5am every morning. She got her 3 grandchildren up for school, fed them breakfast, made their school lunches and got them on their bus. She would clean house, do laundry just in time for them all to arrive back home from school. Make their dinners, get their baths done and get them in bed by 8pm. She did this everyday and on weekends things were that much more hectic. Her 7 year old grandson has Cerebal Palsy among other things wrong with him. He can not walk, he doesn't comprehend much and is solely dependant on adults for his care. She can no longer take care of him or the other two older children. She feels useless and as though her life is over. I can't do a thing to help her. My words of encouragement are of no help to her. She cries often and I feel like she is giving up. I know this is her right and choice to do so but I don't know how to emotionally cope.
Matthew1, August 28, 2019 4:55pm EST
Im so sorry you’re dealing with this. Stroke can be a life changing event for the victim and family. I’ve read some of the other responses and I do agree with many points. It’s impossible to control what a person will or won’t do. But you can control how you handle a tough situation. I think you and your family (without your mother) would benefit from the help of a therapist or counselor to formulate a plan that allows you to help her while taking care of your family. A plan will give you structure and a blueprint to follow so each day doesn’t feel confusing and chaotic.,once you have a plan in place, perhaps you can revisit emotional help for your mom down the road. One day at time is a cliche but it’s also the only way to deal with this. Good luck and stay strong.
JKViggiano, August 28, 2019 7:25pm EST
Hi Rebecca. First, all us caregivers feel your pain. Second, it is very early in your mother's recovery. Anything is possible if she is willing to work for it. Third, I always say Recovery is a Team Sport. Every team needs players, coaching, practice, and goals. Recovery is no different.
Perhaps you can use your geographic distance to your advantage. If she is going to therapy, she probably has exercises to do at home. Are your brother's kids old enough to help her with exercises? Can they be her cheerleaders when she works on them? Will she team with you on goalsetting? Things like "I'm coming to visit in 5 days. Your exercises have you working on ____________. When I visit, you can show me how much you have improved on _______________." You could even set a few goals for yourself and the two of you can cheer each other on.
Goalsetting was HUGE in my husband's recovery. We needed something to work toward and we celebrated every improvement. Goalsetting is contagious--everyone gets excited when the team gets better and scores a goal or wins a game. I hope it is something that works in your family and brings everyone the momentum your mom needs.
It is hard to say goodby to our old lives, but it is the only way to say hello to our new lives. It is a process that I hope you and your family are ready to take on.
RebeccaLynn, August 29, 2019 2:59pm EST
Hi JK! I have tried all those things. I asked her to do a task after each nap. Wipe down a counter top. Fold some laundry. Things that would make her feel "normal" again and useful. She does try. As I said before her endurance is zero. Just walking across the room in her bedroom exhausts her. She is discouraged by this. I was so proud of her today. The care group she is signed up with came and picked her up and took her to Walmart to shop. She walked through the parking lot, through Walmart and back to the car with her walker. That was a HUGE huge accomplishment. Of course she got home and laid down as that wiped her out. She CAN get through this and all I can do is cheer her on. I know she will have her bad days mentally and I for sure give her that space to have them because she has every right to her feelings. She is my best friend and it hurts my heart to see her go through all this and I wish we lived close by so I could be there for her more in person. I know that she has to do this. I can't make it better and that is hard to accept. Talking about it in this group and having other families that understand from this point of view is so much help. I appreciate this group and the metaphorically shoulders to cry on! Thank you!
Missjune, August 31, 2019 11:42pm EST
My husband had a heart attack in July and received a triple bi-pass on August 7th. He had atrial fibulation which is beginning to get better. He does not sleep well. He seems to be awake every two or three hours. His wounds have healed well but his mood has deteriorated to the extreme. I am a-teacher and returned to work this week after the most difficult summer of my life! I cooked loads of healthy meals for him and filled the freezer with them alternating the menu so he doesn’t eat the same thing every day. I made little snack bags for him- some veggie sticks and some uts and fruit. I believe he is really depressed. But he is indenial. We have 4 acres and chickens, dogs and cats. We also have fruit trees that need irrigating everyday. He used to do alot on the land but I have taken over since the heart attack. We live in a remote area of the Antelope Valley and have to drive 30 minutes to get any supplies.I am blessed to have all of this but my concern is that if left untreated his depression will worse . He gets verbally abusive when he is frustrated and talks garbage, gets angry at nothing and nip picks about everything I am doing for him.
What I would like to know is if anyone else is having a similar experience with extreme mood swing in the person they are caring for? Like many of you I am exhausted it soldier on in spite of everything. I know God only gives us the challenges he knows we can endure but I am seriously struggling. My husband has gone from being a very active man to and man very rapidly. It is upsetting to see and I do ‘t Know what to do to help him.
Missjune, August 31, 2019 11:55pm EST
My Dad has a stroke at a relatively young age of 54. It changed his personality to the point that he became abrasive and bad tempered and very negative about everything. I My relationship with him became very strained and I had to leave home. I was 21 at the time. We did reconcile but his behavior did not change. He was rude to people and gruff and bad tempered. I suggested he get therapy or councelling but he was too proud. I understand what it must be like struggling with stubborn parents. My husband is extremely stubborn and won’t take advice from anyone except our son who is an MD. Meanwhile I am struggling with my heart attack survivor husband who is testing me to the limit. I feel your pain but ultimately we have to look after ourselves too. If we burn out or get sick we are no help to anyone. I have no extended family around me. I migrated here with my immediate family (husband and two sons) but my husband has siblings who live an hour away but are no help at all. We are all enduring different levels of personal hardship in caring for spouses or parents. I recently started a course of meditation which is helping me feel less stressed. I pray everyday, but there are days when I feel so alone in all of this.
HERBWOMAN66, October 2, 2019 3:25am EST
My husband's stroke probably wasn't as severe as yours, however he too had a personality change and also changed in many other ways. Medically, he has had 2 bypasses, has diabetes, high blood pressure, ect, is on dialysis 3X a week awaiting his second kidney transplant(on hold now), and because he has ESRD(end stage renal disease) is on a diet that is not @ all heart healthy. He has been on dialysis for 3 years ( I am a RN and did home hemodialysis for 3 years but now he goes to the clinic) and he had the stroke while on dialysis. The stroke should have warned him to slow down, sleep more, eat better, exercise, ect... instead of working 50 hours a week plus 6 hours of dialysis each treatment...
Anyway when he came home from rehab, he yelled @ me about everything. @ first I tried to be understanding, realizing that this was from the stroke. However, like you, I was doing everything - although he was attending full time outpatient rehabilitation therapy. I finally decided that the this was abusive and put my foot down. I told him I really couldn't understand how he felt but I did get it that he was mad, sad, upset, anxious, grieving the loss of feeling, use, sensation, and everything else he had lost from his stroke. I wasn't his counselor, dr, spiritual advisor, or someone to be yelled @ or abused. I was his friend, wife, on his side.
I told him to find a counselor (still looking). If he forgets and yells, I walk out of the room. If we are in the car, I either get out and walk or turn up the radio so loud I can't hear him or pop in a CD.
As far as your husband, you can't control what he does or says or vice versa. However you have control over your own soul and your life every day.
This is what really has helped me.
Good diet. Eat a good breakfast even if lunch and dinner aren't the best all the time- although it sounds like you have that covered.
Sleep. Go to bed and get up @ consistent times. Get a good mattress. Invest in a good set of sheets (cotton)..
Exercise daily - cardio, weight, stretching, -although with your acreage you will get some workouts! Include walking
And Meditate if only for 10 to 15 minutes a day.
Please take care of yourself. Be proactive with your husband. Try not to be hurt by his words, inaction, ect... I imagine myself in a spa bubble bath and each time my husband is cruel by inaction, words, ect, a bubble surrounds whatever he's said, did, or didn't do, then it floats to outer space and pops!!LOL
I meditate with imagery and for me the spa has worked the best. Try to find one for you.
You are in my thoughts. Take care.
I am sure I that you already know every single thing I shared. Sometimes when I am overwhelmed and alone, it helps to hear/see it again. Good luck. Leet me know how YOU are doing.