I am 82 yo and the primary caretaker for my bedridden wife Cheri. She had several strokes 18 months ago. I do her cleaning, medications, food thru a g-tube, trach care and anything else that comes up. I am with her 24 hours a day with minimal help. I sleep in a bed next to her. Cheri and I had retired to West Virginia which is a beautiful place but the medical care is a bit primitive. The Virginia suburbs of Washington have a fabulous heath care system. To get Cheri the medical she needs and to help care for her I bought a house there that was large enough for Cheri and I and our daughter, her husband and two children (14 and 21). Our daughter is fabulous helping to care but she has a full time job and goes to a local university not to mention a family of her own. So I am the one providing all the care. There is no one else. I can’t afford AL and wouldn’t put her there anyway. Cheri is the love of my life and I still am in love with her after 26 years. Caring for her is truly a labor of love and I don’t resent doing it. Of course I get tired and wish I had time for myself. Her condition requires almost constant care. I don’t really feel trapped; maybe I’m deluding myself. I have no options. I assume there are others out there in a similar situation. I would love to hear from you about how you are coping.
And your right, caring for your spouse is a labor of love. However if you're not careful it could be you that dies before your wife from stress related issues. It's so very important that you're taking time for yourself and getting away from your wife's care when possible, whether it's just for lunch with your friends, going to church or taking a walk around your neighborhood. You need to be able to still do the things that you enjoy if you're going to make it to the end, because you matter too in this equation. Please don't forget that.
Like already said your dear wife would no longer qualify for assisted living but would need to be placed in a skilled nursing facility if and when the time comes. The advantage to her being placed of course would be that you wouldn't have to be her burned out, tired caregiver, but could get back to just being her loving husband, while others care for her. So please don't rule out that possibility, as there may come a time when you're going to have to do what is best for the both of you, as like I said before...you matter too in this equation.
I wish you well as you walk this very difficult path with your dear wife.
God bless you.
I'm glad you moved to a location with better healthcare and services. Many a retiree romanticizes how their sunset years will go, not factoring in the reality of decline in health and unexpected and life-changing events. I hope you have all your own legal ducks in a row, like a durable PoA for medical and financial, a Advance Healthcare Directive, DNR (if applicable), Last Will. Maybe creating a trust is good preparation in your case -- this is something an elder law or estate attorney can help with.
You may also need to come to grips with the fact that your daughter and her family could not really provide the same kind of care for you, since her family is her #1 priority. Downsizing or transitioning your own self to a senior community or CCC may be something to think about now so that you (and your daughter) don't have to make any big decisions in a crisis.
Bless you for your labor of love on your wife's behalf. I wish you peace in your heart as you consider options.
You and Cheri sound like a wonderful people. IYou probably did this already but Cheri's doctor can write an order for home health services and, when the time comes, hospice care.
Home health, paid for by Medicare, sends a nurse once per week. She would also be entitled to two bath visits per week. The agency arranged for a hospital bed, lift, oxygen, and a lot of other useful equipment. Our agency, in California, sends over a nurse to draw blood, a dental hygienist, podiatrist, physical therapist and occupational therapist. They also pay for some supplies. The agency has a social worker and a chaplain, who can work to address your spiritual and other needs.
My mom was on hospice for three years. She is doing better so is back on home health. Hospice provided a lot more services, paid for by mediciare. The nurse and doctor are available 24/7 and provide other services similar to home health.
I hope you found this helpful. I wish you and Cheri all the best.
You’ve coped remarkably well
i hope someone gives you the advice you need to get some help and I wish you the very best.
My husband and I are much younger. At 64 now, he suffered a stroke at age 53, leaving him bedridden and unable to walk, talk, or eat solid food. He is also in diapers which I have to change. I help him up out of bed and into a recliner daily, so I can clean and change his bed. I make a special protein shake diet every morning, which he drinks throughout the day. He can not operate the TV remote, so I am frequently changing TV for him.
It's a lot of work, which I don't mind, haven't minded, but it has caused my body to start breaking down. After years of lifting his weight, my hips and knees now give out, so I've had to adapt. I do less for him now. Still, I can't imagine my life without him in it. So, I continue trying and doing my best each day.
How do you cope? I just tell myself this is the journey God gave us. There are no guarantees in life. You plan and hope for your future, but it can change in the blink of an eye, and you find yourself on a different trajectory. This is just what our life is now.
I recognize people have different relationships. Some marriage relationships are not good. If I at all resented being a daily caregiver for my husband, I think there is no shame in finding an appropriate care home and moving forward with my life alone. Everyone has to make this choice for themselves. There is no right or wrong answer, you just have to do what feels right for your circumstance.
I just want to advise you; Please don't put the expectation on your daughter or her family to share in the caregiving burden. That is your choice and it is unfair to expect others to do the same. They may feel differently about it.
Any help you receive should be from hired professionals. Let your daughter decide how involved she wants to be with caring for her mother, while juggling her other obligations.
That said, have you ever thought of hiring a properly vetted nurse to give you time away? Right now, there is a medical blog about trach patients and who is allowed to train. Because of state licensing you will have to ensure training to the caregiver on her specialty care. I have seen this work for special needs children who were kept at home
I cope by using all of my husband's income to pay for in home caregivers while I work; taking small walks with my dog; working full time so I feel useful; going to lunch with "friends"; getting a massage; taking a hot mineral bath (live where there are hot springs); go to a chiropractor once a month.