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 14 hours ago
My husband is 68 and has shown signs of cognitive decline for many months, especially in the area of executive function. He also has COPD, is in denial about both of these and absolutley refuses to go to the doctor. He hadn't been in 30 yrs and will not stop smoking. He rarely leaves the house unless I'm with him, won't socialize, gave up his hobbies and spends most of each day sitting in his chair watching TV. His mother had alzheimers in her 80s but I am very concerned. He does not want to talk much, can't understand inferences and is unable to plan anything. Has anyone experienced this with a lover one? It hurts watching him go downhill and he won't go to the doctor.
about 17 hours ago
So I was just reading a very helpful article about living and caregiving for COPD patients. All was good until I came upon the part about involving family members. It's nearly impossible to involve other people when the patient doesn't want anyone involved. My husband is very private. He only likes to deal with people when he wants to, which isn't often. Plus, I'm still learning how to take care of him so I don't really know what people can help me with besides household stuff that I feel awkward asking for help with. My husband's family doesn't live that close to us and I don't see how my family can help. My sister is married with 3 busy children and my mom isn't in a position to help. Honestly, in this day and age, I think I'd be better served by learning how to better take care of my husband and home by myself. Seems the most realistic. What do you guys think?
1 day ago
My husband has ALS. So much anger is directed towards me. I've been just letting it go but it is getting harder because the episodes are getting closer together (now it's twice a week). Verbal, this morning I was greeted with "I hope you burn in hell) refuses to eat or take all medication.
An anonymous caregiver said...
3 days ago
Question??? We live in a condo with a shared wall, we are renting and the "gentleman" next door owns his side. We both have one car garages with two car driveways, but one side of our driveway is taken up by the ramp. He has started taking pictures of any cars: therapists, nurses and caregivers that park in front of his condo. Isn't the street a public parking place or am I wrong to assume this? As if I don't have enough things to be concerned about!!! Would appreciate any feedback, thanks
3 days ago
It's late and again no sleep. In the daytime my spouse will sleep for 2 to 3 hours at a time wake up screaming for me. I go to him and he can not express what he needs or doesn't remember. Some times he just wants me to stand there and change the channels on the tv for him. Doesn't want any food I cook (even though we been married 43 years and he always ate my cooking before) Always want me to bring to him what we have - no fun carry freezer and can good from the kitchen to the bedroom or go get take out from a restraint. It's getting expensive and time consuming and never mind the fact that I am not support to leave him alone. I worry the entire time I am gone. I am tired of timing myself when I have to get groceries. I rush as much as possible but it seems I am gone 1 hr every time. Thank goodness I can order a lot on the internet. I tried the shopping services and didn't have a good experience. He smokes and won't give it up I have tried everything and he cries or yells at me with his sounds that I don't understand because he has aphasia. I have no help from family or friends (well I have no friends and our children say they can't help because they have their own children to care for) This has been going on for 8 years. He is under hospice care because they keep saying his body is weak and they feel he can die at any time. I don't know what to think I don't think that is true and I believe he will live another 10 15 years (he was 54 when he had his stroke) I have gone through all kinds of emotions from trying to find ways to get him out of bed and do anything but watch tv, yell for me and sleep but I have finally given up on any of those ideas. I can't do it on my own anyway. He is a big guy. I am not really sure what hospice is doing for us. They can't find anyone to come and give me a break. The nurse come some time during the week and just takes his temp and blood pressure. Ask if any med needs to be order and then argue with me on what is needed. The bath aid can not come concisely some time she show up and he is eat breakfast some time she texts me and if I don't respond right away she skips us. She hasn't help with a bath in 3 week.
I am just wondering if anyone has thought maybe we should just end this misery? Everyone talks about quality of life, what quality I am a prisoner in my home he is a prisoner in his bed. I have tried nursing homes to give me a break and only bad things have happened. 1 place the forgot to give him his seizure meds so he had seizures. 2 . Someone (and no one will say who took him outside to smoke and left him so long in the Texas heat that he was vomiting severely - another resident went and got him help. 3. another one forgot to track bowl movement and he went 8 days without one and got an impaction and the final one 4. I was in the hall at change of shifts and I heard the aid the tell oncoming aid, you can just ignore that patient, he can't speak and he cant get out of bed so no one will know if you do anything or not.. How do you all continue on. I don't see the point.
I am just venting but I wish I had the nerve to do the right thing by both of us. Neither of us have a life or anyone that cares. Can anyone help with how to get the nerve to do something or how to get past the fear of dyeing. I think if can get past the fear than I can do something. I guess I just keep hoping there is something more to come and I do want to have it but I am losing hope more every day. Our luck is just the worst
John H said...
3 days ago
Not complaining just explaining and I wasn't always in the frame of mind I have evolved into - I have moved through and reinvented and persevered, accepted and after awhile I learned to embrace my new journey and my new purpose - Caregivers are very very special people and don't ever forget that fellow Caregivers not everyone can be one and not everyone will be. We are elite and truly truly special ! 10 years ago I went from 6 digit 25 years in my own biz to less than a 3rd the income in less than a year. 2 years later at 52 my wife began our journey with AZ and Dementia and she had to slowly stop working. She is now 62 and I 60. I have been her caregiver 24/7 since the beginning as she is my life partner - I can personally tell you the One on One care I give her has kept her alive - At first for years I was lost, angry, why me syndrome - Been through her angry fits, having to cover mirrors and take down the family pictures, Her hating me calling me names, her walking around swearing. Taking her with me on outings and people staring. Been through losing our friends and them not coining around anymore ( Figured they were to scared in thinking if they could choose the road I did to stay with my life partner - now been 37 years - That's what vows are for) - Been through her not able to figure out how to use a spoon and fork - She grazes the finger food, veggies,fruit I make for her and leave on a bright colored dish cloth on the Kitchen counter- Been through her and still handle her incontinence I put her on the potty 5 to 6 times a day-Been through her varying stages of should be annoying sounds clapping, whistling, yelling all becomes just gray noise-On and On and On And I know there will be new pages and new chapters in the book ... Been 3-4 years now that she hasn't known who I am-But she feeds off my emotions-I smile and laugh and she will too .... Always Keep moving forward, Keep positive and proactive. When you can't - close your eyes turn around and look at all the good things around you no matter how small or old - You will hit brick walls - Learn to go around them and keep moving forward - When people can't help you ask what they suggest and Thank for their time because you never know what door will open, doors will open and lead no where and doors will lead to other doors and sometime they are garage doors opening - This is not a dress rehearsal - This is it - If you choose to be a Caregiver then you are and be the best you can be - I always think of how well my wife is doing for having only potion of a brain - Alrighty I am out a breath but not out of stories, help for other, love for life love for my wife - I will leave you with this
I sent this to an incredible Lady going through a similar Journey that my Pammy and I are on - Wanted to share my thoughts - Smile and always know - Yesterday is full of incredible memories and wonderful times - Today is Life - And tomorrow is for the dreams that keep you moving forward to create the new memories
Be strong and keep moving forward - I have not finished our journey nor my journey - God Bless
3 days ago
Hello, I found out my husband is terminal today. We have had a rough relationship for decades. He was cruel and I fought back but never left. First I needed help raising our daughter. I left once and she was assaulted at age 8, so I returned to him knowing he would not hurt her. When the kids where grown ( 2) it was a matter of finances. We just road a roller coaster for over two marriages to each other. It has not been intimate for over 8 years. Now I face being completely alone.. I am so used to this I am panicking. I will not leave him alone in his darkest hour and will do my best to be kind. I have used his cigarettes as a bone of contention and that is what is killing him.
I am left with enough money to pay the bills and a house that is paid for. I owe about $30 thousand but have enough assets and cash to pay it off. There are so many things to take care of. Two houses I might need to sell if I move to where my daughter lives plus a move across country. We have already agreed to funeral arrangements and have it's payment. You would think this would be easier for me than other spouses, but it is not. Why do I still fear the loss so strongly already? He is also being kinder than he has in years, I am at a loss to figure out what is going on with me.
3 days ago
This evening I attended a welcome dinner for new parents at my son's school. Again, I invited my husband to go and AGAIN he declined, leaving me to attend yet another event by myself. Thank God there are always other mom's or dad's without spouses but it'd be nice to have my spouse accompany me to this stuff. When I got home and said to him that I wish he'd gone, he admitted that he feels self-conscious because of the oxygen. While I get it and already knew that was a reason why he doesn't go, I don't want to give him a pass for that. Seriously, why can't he sacrifice his own feelings for me. My spouse is not dead. I'm not single or widowed and I'm so tired of feeling like I am, of course, until I come home and he's here. My life, my life, my life.
I sat at the dinner, surrounded by many financially well off families and I became a little envious and angry that my husband and I didn't accomplish the things that we could have if he hadn't been so darn bitter from his previous marriages. By the time we got together, he couldn't care less about having nice things. We both had good jobs, a great combined salary but he was so wasteful. And I'm so mad at myself for not thinking longterm when I allowed myself to fall in love. But 20/20, right? Everything is crystal clear when you're in the middle of mess. But all things happen for a reason and I'll shake off this discontentment soon enough.
4 days ago
Feeling resentment caring for my husband continues to smoke with severe COPD. He complains he's tired and weak, STOP SMOKING. He discontinued all excercise because he cant catch his breath. He has been in this wheelchair one yr as if this past june. I have to sponge bath him cause he wont get on the shower chair. My life has been put on hold also. EVERYTHING IDO revolves around him. I'm tired. Thanks for listening
4 days ago
Good morning fellow caregivers! Woke up this morning feeling exceptionally lousy and in need of support. I feel so terribke because i was turned down for another part time job. I am 54 and think i am running into alot of age discrimination. My husband continues to work despite his poor health and progressive phyiscal disability. Watching him physically decline has been a real knife in the chest. He has foot drop, cannot lift his left arm,, wears a brace on right wrist cause it flops and has little strength in his arms. His face is now being affected. His left eveylid is weak and when he smiles the right side if his face does not move. It makes me crazy cause he never talks about the way he feels and he has been ill for about 7 years..... His denial and passive agressive personality is really getting to me. i do not hesitate to call him out when he is being a jerk. I am also helping my parents alot. I have sibblings nearby but they do help my parents at all... Sorry for the rant!. Any advice would help!
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