I have been taking care of my 92-year-old husband solo for 9 months although it seems like much longer. I am 74 and came off 3 years of treatment for ovarian cancer and lymphoma in April. He cannot use his legs, so is wheelchair bound and depends on me to get on and off the toilet, for help getting washed and dressed, and many times asks me to wheel him from one room to another. His mind is mostly OK although I suspect there is some decline. He also has stage 4 congestive heart failure. I am so tired of this. We have talked to hospice, and he qualifies for their help. I don't know that I am asking a question here, more like blowing off steam, but I feel exhausted, resentful, and put upon. I can't remember the last time I felt happy. I guess I just wanted to sound off.
As I write this I just watched my father lock me out of the house. Not on purpose He has dementia and doesn't do a thing for himself but loves to turn off lights and lock doors. It's ok, though, because I was smart enough to bring my keys with me so I can just walk around the house and come in the front door...
The caregiving arrangement must accommodate the caregiver, just for this reason: to prevent burnout. If you degrade mentally, emotionally and physically then who will be the caregiver? You are the priority. Anything you choose to do that helps you is acceptable -- whether your husband wants it or not.
First, does he have a PoA? If so, is it you? Or someone else? The PoA must read the document to find out what activates the authority. It is usually 1 medical diagnosis of cognitive/memory impairment that necessitates the help of the PoA. Get this diagnosis on clinic letterhead and signed by your husband's primary physician. The PoA will need this to manage his affairs, especially financial ones. My Mom's annuity manage company made me jump through all sorts of hoops in order to be able to access her funds. You (or the PoA) do not want to do this in a crisis.
If your husband doesn't have a PoA then he sounds like he is still able to make this happen. Legally the bar is low for "capacity" to do this so don't make any assumptions. The elder law attorney will interview him for capacity and decide.
Why am I harping on the PoA issue? Because it is where a lot of care decisions, actions and possible solutions get stalled. Especially if your husband becomes resistant to a solution that is in both of your best interests. An activated PoA can make it happen.
Maybe start by hiring a companion aid for him a few hours a day, every day. If he balks, you tell him the aids are for you. Hire out services that you are currently doing, like housecleaning, yard work, etc. If your husband is in decline he is losing his ability to use logic and reason, and his empathy also will disappear -- as these are all parts of dementia. He will start to not see or care that you are burning out due to his needs. Therefore you are your own best advocate.
If money is tight, consider contacting your local Area Agency on Aging for information and help. Or, contact social services for your county to see if your husband qualifies for any in-home assistance, like light housekeeping, food prep, hygiene, transportation, etc.
If your husband doesn't have a PoA and refuses to create one, inform him that your hands will be tied and the county will eventually have a court-assigned legal guardian take over all his care and decisions, including what facility he goes into and when.
There is always an alternate solution. You just have to be willing to accept it.
I wish you success in reducing your load and peace in your heart on this journey.
I am concerned that if my cancer reoccurs I won't be able to do chemo and also care for him. He has a son who is in Florida. He moved there when all of this started. Can't depend on him for much,
Husband has talked about stopping eating and drinking but wants to wait and see who wins the election first. Is this crazy or what?
I sure and sorry and I sure do wish you the very best ongoing.
I'm sure this is unbearably hard.
Vent anytime you need to. 🙏😔
He has Hospice now but they only come two ore times a week to bathe him and a nurse once a week to check on him. I have bit the bullet and have hired someone to come in for two hrs a day.
Hospice has been mostly a support system which I appreciate having someone in our corner. If you have a problem they will try and help but if you need more than that, you need to hire someone to come in.
i fight depression everyday but the support hospice gives has made it tolerable.
Good luck.
The loss of my dear husband is unthinkable but, there are worse things than dying and we are in agreement with what those are. If your husband makes this decision, I would encourage you to bring hospice on board to make it as easy as possible.
I pray that you both have peace for whatever tomorrow holds for you.
You need help with Custodial Care...I would bring in services. The Primary Care Doctor can write orders through your insurance for CNA, Physical Therapy, etc.
Just do it...don't ask permission, it's a necessity. You can request a male if you think that would help.
Only you can decide what you will do next, but you obviously cannot continue this pace. I am also 74 and doing a lot. I know it is difficult at our age to admit that we cannot do what we could have done 20 or 30 years ago. However, your own health is very much on the line. You need to take some time to consider what you can do to free up some time for yourself to simply be you and do what you need and want. You cannot enslave yourself to your husband's needs. Something needs to give other than you. Check with senior services and see what can be done to get some help. Maybe you can get someone to come in daily and help your husband to clean up and get dressed. Perhaps you can deal with the rest of the day better if you can have a few hours in the morning for yourself. Maybe afternoon or evening help would work better for you. Find what will work for you.
Getting someone out in the morning would give you a break.
You can also self refer to hospice in my area. Call them and an RN will come out to evaluate. When Mom was in home hospice she got an RN coming out to the house once a week. We did not use the CNA service as we had some private pay caregivers. Normally hospice will send a CNA out twice a week to bathe.
I don’t mean to sound rude. I don’t doubt you love him. It just seems so common on here (and society in general) that a woman marries a much older man, they feel blindsided when their husband ages and can no longer be the established, stable, virile man he was. Or the wife sees it coming, but didn’t think she’d be the caregiver and no longer the wife. I’ve seen
some younger wives complain that their husbands no longer want to travel or do much of anything. Well yeah, they’re 18+ years older!
Hang in there. I am hoping you get some relief.
You have been through so much with this disease. Hopefully support will come to help you with your husband, so you can rest in and relish your recovery.
Just when things were starting to calm down, I was diagnosed with stage 4 cancer, out of the blue, from a pain I was seen for in the ER. Then I started immunotherapy and had a very, very bad reaction to it. It put my cancer into remission but left me with a big disability causing dh to be MY caregiver now for the past 19+ months.
To say we're tired and have medical fatigue is a gross understatement. I feel your pain, my friend. I hope the cancer never comes back, but if it does, you'll have chemo and get dh into a SNF with hospice. Period. I hope you will consider your life as important as his, and recognize when YOU need medical attention and step back from your caregiver role. Just as I expect my dh to step back from his caregiver role if he needs medical attention. I hope you get dh on hospice now. Take the extra layer of support. If my cancer comes back and can't be treated with surgery, I'll call hospice for myself since I cannot take immunotherapy again.
We have to put those "what if's" out of our minds and do what we can to enjoy the moments in life, appreciate the beauty of the small things. Take it day by day because that's all ANY of us has anyway, in reality. I wish you good health and your husband no pain and suffering during the rest of his journey. God bless you both as you love one another through these moments.
God bless you as well.
You need, you deserve, you must find a way to have a reasonable amount of time to yourself and to be able to enjoy your own life on your own terms. No guilt. Many have given good suggestions on how. Good luck!!!! You can do it!
I so understand!
I have been taking care of my husband (much younger) for 9 years! As I am aging - we are both 62 - I find my body giving out and the physical work of getting him in and out of bed is becoming too hard! I know I should be stronger, but 9 years of this has taken a toll on me.
I hope you get hospice care - which can come in many forms. He can stay at home and have caregivers come to help with care needs.
I'm wondering if you have talked with him about using an incontinence product instead of helping him on and off the toilet. Or a bedpan, or some other solution.
You really should not be lifting his weight on your own! Please try to get help!
It will ease some of your frustration!