Taking care of my husband
I apologize in advance for this will be a bit long. My husband and I have been together a total of 7 years. He’s been disabled and in a wheelchair his whole life. He is also on an external ventilator. He needs help with everything other than eating and using the computer.
I have never cared about taking care of him. That’s worded poorly… I don’t mind caring for him. I’ve cared for people my whole life. My parents are also disabled. Throughout my adolescence, I developed severe hypochondria. Now this isn’t about going to the doctor, it’s about obsessing that I have some serious undiagnosed illness. I go to the ER at least 4 times a year.
This wasn’t an issue and we both knew this while we were dating. However, I have PTSD. This is from a different event but has since applied to other medical events. Four years ago my husband was in the hospital with the flu and pneumonia for 10 days and almost died. I was terrified and couldn’t sleep in the hospital because the nurses weren’t well trained on his specialized care. One nurse even asked me “what are you doing, you’re hurting him?!” When I was helping him manually cough. The piled up lack of no sleep, fear that if I did fall asleep and miss a beep or a ding that he would die has stuck with me.
A couple months ago he was in the hospital for a minor infection. We had to stay a few nights. The first night I fell asleep for a couple hours and woke up with extreme chest pain and started panicking. I had a full blown panic attack begging him to go home. So why am I telling you this?
I need advice. My PTSD and hypochondria has recently gotten severely worse. I’ve come to realize that I cannot sleep in a hospital. I can spend 12 hours there but I just can’t sleep there. However, my husband needs someone there who understands his care 24/7. I asked him to create a plan for the next time a hospital stay is needed and it’s caused a huge fight.
He feels it’s wrong to ask his parents because they have lives and shouldn’t be expected to drop everything. I feel like it shouldn’t be expected of one person to take care of someone constantly while they’re in the hospital. Everyone needs support. Everyone needs a break. Can anyone offer some support? We’ve only been married a month and this has put significant strain on our marriage.
@coreygirl10 I give you a ton of credit managing your own struggles during a critical hospital stay with your husband! My gosh give yourself credit for doing this, I'm sure you were exhausted. I am familiar with the gift that respite programs can offer families and loved ones of those needing specialized 24/7 care. Each community would have different resources but a lot of non-profit organizations have links to quality respite. A hands on training and emergency manual would need to be in place so both your husband and of course you would feel confident he would receive what he needs if a hospital stay was needed again. I can attest to the gift that quality respite provides and it may be an option that helps? Best of Luck to you!
I honestly had no idea this was a thing! Where can I find such a thing? I wouldn’t have the slightest clue where to even begin to look. I would love to do this.
@coreygirl10 I recommend starting with a general search online for respite services in your geographic area. In the US, which is the only reference I have for this and should have stated that in my last reply, some services are linked with agencies that provide ongoing residential care to folks with varying limitations and disabilities. Also government funded nursing services (depending on your location) may offer some "as needed" supports- like for hospital stays. You are not alone! If your husband is on board with the idea might be helpful to chat with his general care physician to find out what resources and benefits are available in your area. Best of luck!
@coreygirl10
Welcome! I can relate, as I was caregiver and partner for my late partner for over a decade due to his end-stage renal disease. I am familiar with the scenarios in the hospital, as well as the dialysis unit, and all the accompanying emotions. I'm sure I have experienced all of them. Being a caregiver is hard, draining, worrying, etc. My empathy for you is off the charts.
That said, I want to second the advice about respite care. In my state, we have something called Centers for Independent Living (CIL) which may or may not exist in your state. Each state funds such things differently. A CIL would be able to guide you through the maze of care agencies, respite care services, disability law and disability rights. Also, if you go to the hospital in the future, please ask for the patient advocate or a hospital social worker. Their whole job is to advocate and support patients and family through the stressful period of hospitalization. You may already know this but it is worth repeating. Make use of these services whenever you can.
if I think of other ideas, I will add to my post. Hang in there! ❤️
Yes to all of those who recommend respite care. My mother-in-law was completely dedicated to caring for her husband when he had a form of dementia that did not fit neatly in known categories. She kept him at home and took great care of him refusing to send him to a nursing home. But when her father died and she could not get across the country to see him before he left this earth, she finally realized she needed help. She had nurses come in and some were good and others weren't a great fit. She picked the best match and hired that person to help her with caregiving. Then when she had situations where she couldn't be there all the time - such as you have with hospital care - she had an advocate to stay with her husband and give directions to staff and report to her as well. She was able to give instructions about medications that should not be used, how to get him fed, etc. Good luck to you. And take care of you! Know that your health is just as important as your husband's. You must be able to get your rest in order to take care of him.
@coreygirl10
It's no surprise that after a hectic days caring, you find yourself worrying about your own health. Yet it's more than likely you face those concerns in private, whilst putting on a brave face to care for your husband.
Being unable to sleep in the hospital could be the result of the pressure you are under, combined with a busy hospital environment.
You feel the need to stay with your husband whilst he is in hospital and this is leading to a constant fear of missing any change to his health whilst you are falling asleep. This fear will only make your anxiety worse.
It appears that you are the sole care-giver - as your husband doesn't want to ask his parents to help.
However.....This places more responsibility of care upon your shoulders.
What about your life......?
Professional carers could help to ease some of the pressure and give you a well-earned break from time to time.
Carers can help with some of the practical, personal caring tasks - even if only a couple of times a week.
It may be a challenge trying to persuade loved ones of the benefits because of costs - which there may be help available. It is worth researching.
Not everyone wants to be cared for by strangers. Very understandable. There are issues such as personal pride, trust and it goes without saying - your husband will not get the same quality of care you give freely and with so much devotion.
It may also be worth making enquiries about equipment to assist with basic, practical everyday tasks - such as commodes, support aids, easy-fit clothing and so on. These may help encourage your husband towards a little more independence.
It's understandable - because of your concerns - that you want to be by your husband's side when he's in hospital.
A hospital environment can cause much anxiety - so let the doctors/nurses care for your husband.
It'll be hard for your husband to not have you at the hospital all of the time. Yet - at the same time - he'll appreciate the true value of your personal care.
Go home and get some well earned rest.
You have Post Traumatic Stress and Hypochondria - all leading to further anxiety.
All of these can be addressed through some counselling/therapy.
It appears that your hypochondria developed as a result of all the caring.
You have spent your life caring for others who have experienced some difficult times in their lives.
Caring for your parents when younger was a responsibility that involved dealing with their health issues, yet putting aside your own concerns.
There are books, self-help materials and maybe online courses that could help you with health anxiety (and PTSD).
It is also very natural for us to develop health anxiety as we get older.
For you, health is a major subject in your daily routine. Probably more so than a health professional because you are on call every hour, every day.
Your obsession with a serious illness may be a result of all this caring responsibility, leading you to question your own health.....Yet having to accept that your concerns go un-noticed.
The visits you make to the hospital could be your way of looking for an emotional release from the pressures you are under.
Maybe a secret way of crying out..."Please listen to me for a change...."
For carers like yourself, there's a conflict with nagging guilt.
When caring for someone, it's always the worry.....
Is it enough? Could I do more? Will my partner feel neglected if I don't arrive on time or leave earlier than usual?....
Health problems are a challenge for your husband - so life must be difficult for him.
However. You are the one dedicating time in order to make him more comfortable.
Making more time for yourself, organising some professional care and addressing your own personal problems will help to ease some of the burden.
It may help to encourage your husband to work with you on making these changes - such as the care plan you mentioned - and help make each day a little easier.
Hopefully, you'll both be able to work out a plan that will enable you to look forward to enjoying your new married life.