Caring for a Spouse
Welcome to this online support group for spousal caregivers! Please introduce yourself - Ask for advice - Share your experiences caring for your husband, wife or partner. Talk about ailments and treatments, caregiving and relationship challenges, daily life, your tips for others. Vent, laugh, and come back to this online support group as often as you need to feel less alone. Some featured conversations to help you get started...
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What's New Today
about 15 hours ago
Day in day out, my husband sits in the same chair...drinking the same drink( mountain dew).. watching the same shows (only movies with John Wayne) wearing the same bathrobe he's had since 1981. He never wants to go anywhere, do anything different and never wants us to have anyone over because he says his TV show is interrupted. Such a boring, unhappy life. Nothing new happens here.
1 day ago
I miss having the relationship I always imagined with my husband. Right now I'm in bed while he's in the other room. Sometime I deal with his self-isolation just fine. Sometimes I don't. I want my husband to want to spend quality time with me when we can get. I was off work today and instead of enjoying time together, we made little snippy comments each other. Tomorrow I'm going to a friend's barbecue. I'm not going to bother inviting him. Tired of him declining. He's made it clear that he does not want to be around ppl in this condition. I try to understand how he feels but its not fair to me to have to live so alone in this marriage. Of course I can't share how I feel or he'll think I'm trying to make him feel guilty. Glad I can share with you all.
2 days ago
I have a disabled son, an aging mother with schizophrenia and a partner (whom I love very much) in a long distance relationship who probably has Avoidant Personality Disorder or at the very least serious self-esteem and conflict-avoidance issues. Some days it is just ..... hard. I feel lonely and like I have no one I can talk to. Particularly when things are difficult with my partner. I am trying to find an online community I could get to know so that I could just reach out to connect with someone when I'm feeling overwhelmed.
After 3 years of steadily declining health, (diminished lung capacity, thyroid cancer, 250 lb weight, UT infection, and overall lack of exercise) my wife just got back home from 2 months of hospital and rehab. While she was in rehab, she did her exercise and seemed to be steadily improving. Now that she's home , she is already (5 days) back to claiming "I can't do it". She swears she does her bed exercises when I'm out of the room (supposedly so as to not bother me), but I doubt it. I'm 65 and am no longer capable of picking her up, so whenever she get down , it's "call the paramedics for help". She turned Jehovas Witness a couple of years ago, and she now believes "there's a better world waiting where we'll all be healthy again and run and play like we're kids". I'm afraid she has secretly decided to just sit back and wait for this "better world". I love her dearly and would love to have her around for a few more years, but I can't do this on my own. At the moment, I'm doing everything by myself, but am steadily falling further and further behind on pretty much everything. She keeps telling me "we need to do this or that", but I can't seem to get through to her that every time she says "we", it actually means "you". She either gets mad or cries if I say that she's not really trying to do things. But I truly believe she gives a couple of lackadaisical try's and then simply gives up. I just don't know what to do anymore. OK. Rant ended.
My husband has secondary progressive MS and has extreme physical disability as well problems with cognitive function. He has developed something known as delusional jealousy. He believes I am cheating on him every time I leave his sight. I have been dealing with this for over a year. I tried to get him admitted to a psych ward for evaluation but they would not take him. He sees a psychiatrist but meds do not seem to help. I always believed I could stick by him no matter what, until death do us part but I am at the end of my rope. I wonder if anyone else has been through this and found any relief. I cannot really put him in a nursing home because he does not qualify for medicaid and we just do not have the money. He cannot really go to a relative because they are not equipped to care for him.
3 days ago
I'm sitting here with the tears flowing and I don't even know where to begin. Two years ago my husband who has MS, had a stroke and at that time was also diagnosed with an inoperable brain tumor. To make a long story short after the diagnosis one thing after another happened. There was radiation and then chemo. After every round of chemo he became weaker and weaker and would end up in the hospital with blood clots in legs and lungs, then one infection after another until last August when he had a huge MS Exasperation and basically went to sleep and slept for a week., He was delirious, agitated and restless. They finally put him on Sol u Medrol to try to stop the MS Exasperation. After a few days they sent him home on hospice (he could not get out of bed and he was barely able to get three words out without great trouble) and everyone thought he was not going to make it, but he did. Once he got home after about 10 days he began to stay awake longer and each day get better and better. We had hope once again. I found out our health insurance would pay for PT, OT and Speech therapy even though he was on hospice under their Compassionate Care Program. So I got him started on all three and he rapidly began to improve every day (he regained his speech, and started walking again, even began transitioning from the walker to the cane to the point where just before Easter he graduated from Home Health Therapy and began Outpatient Therapy. He had improved so much that I decided to take him out of hospice and this was going to be the year he was going to get his health back and we were going to try to travel. Last Saturday he had a followup MRI for the tumor which has basically been stable since radiation ended November 2015. Yesterday we got the results and they were not good, the tumor is growing again and has doubled in size since last August. As I sit here I feel sad so sad, and angry at God. I just don't understand how one person could be given so much bad stuff to deal with. I am angry at God because I worked so hard taking care of him these past two years, and he worked so hard getting well. He is finally at the point where he has some sembelence of his life back and we had a trip planned over 4th of July to celebrate. I am sad for him having to deal with all this again and I am very scared for our future if there will even be a future. I guess I always knew that this day would be here again as cancer is unpredictable, but I think I was in denial because he was doing so well physically.
We will be going back to the Neurosurgeon tomorrow to see what our options are if there are any. I am feeling very anxious I am not ready to lose him so soon. I need help. How do I deal with all this?
After a different family situation last night that left me sad and worrying, hubby woke me up at 1AM to tell me he & bed were soaked. Change him, clean him up, change bed, start washer and try to sleep till 5AM when he got up and I had to dress, walk dog, undress, shower, dress for work, see to his morning needs and 7:30 time for a cup of coffee. Afternoon he HAD to have a Sprite to drink to help w/b.m., didn't work. Bedtime and he is screaming at me to get him on commode and I lost it!!!! Tomorrow I am to get a cortisone shot for my hip so I can walk & sleep w/o pain. Why bother, if I still have to help him. I told him I just cannot do it any more. If I get totally down, my kids will have to take me to another state to care for me. Yes, it has been a bad, bad day here in this household, along with many of you who have also had a bad day. Is it any wonder that both of the couple get so stressed out that one ends up killing the other? I tell you, who hasn't thought it! But, we own no guns, good reason why not to. Hopefully I can get some rest tonight and tomorrow the sun will come out and all will be forgiven, forgotten and life will go on. And may God bless us all!!!!
5 days ago
Me and my husband have been taking care of of a family member who has had a severe stroke that put her in a wheelchair with paralysis on the right side so she is complete care 24/7 365. We have been taking care of her for over a year with no break to speak of, we go nowhere and do nothing except going to the grocery store for what we need that night and back. We have trouble taking care of the apartment we live in like doing the dishes and things like that. We can't seem to take care of ourselves or even have the motivation to shower half the time. We are not eating or sleeping right at all, me and my husband are at each other's throat all the time as well. The depression is so great at times, almost to the point of being suicidal because of feeling trapped. We have searched everywhere for respite care but most are private pay, which we can't afford or the insurance won't cover it. So what do we do? We are in desperate need of a vacation or something of that sort, we are at our wit's end and our breaking point. Please Help.
6 days ago
How do you know when it's time to walk away from a mean sick husband? My husband is so angry today and he becomes so verbally abusice to both my son and I, I just want to get away from him. But there's nowhere to go in that moment. Trying to ignore him sometimes proves fruitless because he just keeps going. Doesn't make it any better than while he's behaving this year way he needs our help so he's even more angry and resentful. My son and I don't deserve this from him. It makes me angry that his children don't know about this behavior. I've wanted to call his oldest daughter and tell her but what good will that do? What's she gonna do? Call her dad and tell him to be nice to us. That could make him more mad. These are the times I just want God to put him out of his misery.
6 days ago
A friend of mine suggested that I help my husband find a new purpose to revive his passion for life. I didn't bother to go into all the suggestions i've made to him about volunteering somewhere, using his training skills to teach youth or seniors. He's so smart but so stupid when it comes to life. I had to stop investing my time looking for opportunities that he's not interested in. It was stressing me out. I needed to invest that time in myself. My husband has decided how he wants to live the rest of his life--smoking, pulling all-nighters, and making music beats. So what can I do but live my life and hope we meet up somewhere in the middle and share some good moments
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