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
I am so tired of our health insurance company constantly auditing all of my husbands claims. Back in April, he fell and hit his head on the cement. OUCH! He was shaken up by the fall but ultimately okay. Because he is on blood thinners, I wanted to be sure that he did not have any internal bleeding or anything, so I took him over to the ER. They did X-rays and MRI's etc and determined everything was ok. All he had was a pretty good bump on his head. So he was sent home. I had forgotten all about that until I get a letter today from some independent auditors the insurance company hires asking what the visit was for and is there anyone else responsible for the injury, etc. Well all the letter listed was the date of the claim and no other info. So then I have to dig through all his massive claims, and then go on Aetna online and try to find out which claim they are talking about.. This is all so annoying and adds to my already stressful life. I don't understand why they can't just review the insurance company claim and see everything they need to know.
I am just wondering do any of you guys experience these constant audits of your spouses claims as well?
1 day ago
Don't forget who I am
Do not forget me Or who I still am Come visit me and hold my hand
Just talk to me As you used to do Do not be angry If I can't remember you
I'm still the same person I used to be Please don't sit there being judgemental of me
I love you all As I have done before I struggle to remember However I can't anymore
Deep down inside I have not changed It's just my memory that is now strange
See my sadness My eyes filled with tears Lost in the past Trapped in the early years
I need you more Than I have done before So don't be afraid My friends knock my door
1 day ago
My husband of 38 years has stroke related dementia. He is 69 and I am 58. I am new to this group but not new to the pain of being my beloved husband's caregiver. I work for the Federal Government at a wonderful job I have had for 12 years. He had a stroke in 2014 and fell and severely injured his back also. He is a retired RN and Pastor. My Fairh keeps me going but that does not make this cruel disease any easier. We have made two years of progress with lots of love and therapy. This week he suffered another stroke! I am now back where we began. The sadness I feel is beyond anything I have ever dealt with and I feel so alone, as if I'm the only one to do this for him. Because I have missed "too much work" I also lost my job this week!!! I am devastated and need your support. God Bless
1 day ago
My husband is so drowsy all the time. He is constantly dosing off all day long. He can fall asleep anywhere. Sometimes he sleeps so deeply it is hard to wake him up. I keep telling the doctors this and they just kind of dismiss it. i don't know if it is the meds that make him so sleepy, the fatigue from the MS or all his other health issues.
Do any of you guys have this issue with your spouses as well?
1 day ago
My husband finally made it to his primary care doctor yesterday and she has really ticked me off. She stepped out her lane and told him that he doesn't need to take a medication prescribed to him by his rheumatologist. And my husband wants to take her advice. This is totally ludicrous! The rheumatologist prescribed it to work with the prednisone and his pulmonologist also reiterated the importance of taking this second medication. After we discuss this, then my husband goes on a tyrant about not seeing his rheumatologist on a monthly basis like the doctor has requested right now. He says he's not going to let the doctors pimp him like that! OMG. I know he doesn't like paying the copays BUT he shld understand that monthly appts with this doct won't be ongoing. It's only because he's trying to monitor the effects of the medication on his condition. He's adamant that the doctor doesn't need to see him in the office and he's going to go when he decides to go. He was getting loud and I was starting to be combative so I decided to back down and tell him to do it how he wants to. But it's really frustrating trying to assist someone when they're going to do what they want. I'm just praying that I don't get or stay frustrated with him. I have to remind myself that this is his illness to live with. He's in control. I'm only here to support him how I can. Still frustrating though.
3 days ago
Yesterday I made a call to a palliative care service provider to ask a few questions. I'm hoping that my husband will be open to a consultation in the next couple of weeks. In the meantime, today he finally made it to his primary care doctor for a physical. I didn't go with him, figuring he can handle this one on his own. Hopefully he will also stop by his rheumatologist to get his blood tested like the doctor directed. Anyway, that's all for me today--right now.
3 days ago
I am having a very emotional day today. I have been crying all morning just thinking back 1 year ago today. It was exactly one year ago today that I loaded Bill in the care and drove him to the ER for what I thought was an exasperation of his MS, only to be diagnosed with a stroke, brain tumor and exasperation of his MS. That was the day our life changed forever.
He is only 61 and In this past year he has had a stroke, followed by 2 weeks in patient stroke rehabilitation, followed by biopsy on brain tumor (which was not able to be removed due to the location), followed by a staph infection he caught in hospital requiring another hospital stay and another 2 weeks inpatient rehabilitation to build up his strength. Next he did 6 weeks of radiation treatments which he tolerated very well and actually improved quite a bit. He was just transitioning off his walker back to the cane, when he started chemo in January and after his first round of chemo he ended up back in hospital with a DVT and PE. After a few days in the hospital it was back to rehab. This time they kept him 3 weeks, but he did not see the results from rehab that he did the other two time. From this point it has been slowly downhill.
Now after three rounds of chemo, he struggles to walk with the walker, has become incontinent so needs to wear a pull up, needs help to bedside commode and to be cleaned up afterwards, needs help dressing and the aphasia he had after the stroke seems to have gotten worse.
The hardest part for me about all this is not even the mobility issues its the cognitive deficit. Sometimes he is so quiet because it is just so hard for him to find his words. Its almost like I live alone sometimes. I talk to the dog, but she does not hold up her end of the conversation. I am just really missing how he was right now. I feel if his cognitive function could be restored, I could adapt and deal better with the rest of his health issues. How do those of you whose spouse suffer from cognitive issues, aphasia or difficulty communicating deal with it? How do you keep from thinking about how things were and just accept how things are and move on from there.
3 days ago
Today is a beautiful day at a lake in Idaho. My husband has been fighting stage 4 lung cancer with mets to the brain for 2 1/2 years. lymph nodes and bone. After 5 days in the hospital due to him losing the function of his left side due to swelling in his brain, he came home on hospice. He is 58 now and has only lasted this long due the fact that he was so healthy when otherwise when diagnosed. He never smoked, drank and rode his bicycle 30 miles a day, much healthier than I am as I am disabled.
His sister and her husband, his caregiver and myself are all caring for him now. We are to be at his families lake house for 16 days but he has gone down hill each day. I asked him if he wants to go home but he says no. He is lying in bed now and when he can open his eyes he see the lake.
While I am very sad I am glad he is where he wants to be.
An anonymous caregiver said...
3 days ago
It is a loosing battle to be caring for a spouse who is very abusive every which way . I need answers also. Getting away or living apart or assigning even part of the responsibility to some body else is not at all possible. Tha pain of being responsible for chronically unwell spouse both physically , emotionally and in chronic severe pain some where or the other is definitely very frustrating challenging and TOUGH. If we can accept the ill fated state of self and spouse , and that no change is likely Then the situation may be relatively easier to manage. But do not be hoping for either pot of gold nor rainbow - It is all rain rain rain - and pain ,pain and more of it. You come to philosophize that there comes time when pain is the New norm ! and PAIN IT SELF IS GOD. HIS TEST OF OUR ENDURANCE WILL GO ON UNTIL THE LAST BREATH>
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