I am caring for my husband, cognitive decline and stage 4 lung cancer. We are both in our mid 70s. Anybody out there caring for a spouse? I wonder if the issues are the same or somehow fundamentally different when caring for a spouse. I am beginning to worry about things like not having the strength to help him up when he falls, any suggestions? Thanks.
To answer your question, yes, the care is basically the same no matter who is afflicted.
Remember your strength and self care—you caring for him yourself can be a tall order.
Blessings
And, yes, caring for a spouse is different from a parent in significant ways. Hopefully the shared link is love and a determination to care for and protect your loved one.
Do a fall assessment for any hazards. I think Medicare will send someone to your home to look for hazards.
Talk to your husband about using a cane or other assistance device. A fall could be catastrophic for you both.
While I treated for cancer, 2 years ago--ending just 9 months ago--he did nothing to help. Planned as many business trips as he could and was actually gone for 3 weeks at one juncture and did not call nor text one single time to see how I was. He just could NOT deal. I thought he wanted me to die--turns out, he was so distraught over the thought of my dying, he could barely function.
BUT--he expects 3 meals a day served to him in bed when he's sick. If he's in the hospital, he expects that I spend the entire day with him and sleep there if the hospital would let me. And I better be back up there by 7 am so I can be there for rounds. Then he'd sleep all day long.
I cared for my dad, albeit, PT, but he was just grateful for any time I could spare and always thanked me. My FIL was the same. (Actually, caring for both dads was a year long effort--I was running to one or the other home every day).
Dh and I are in the process of retirement-home shopping, b/c our home has 47 stairs that must be navigated everyday. I had major foot/ankle surgery repair in July and am much better, but stairs will always cause pain. DH has fought me tooth and nail over this move. I finally told him that I was then moving alone to a studio apartment and he could have the house and all the hassle.
So, long story short--caring for my DH is 100xs harder than caring for the dads. They were FAR more grateful and kind than DH is. I have to take responsibility for the fact I have created this 'tyrant' and un-creating him is not easy.
Its been incredibly difficult on us. He thinks I'm controlling and bossy. He hates my interference and resents everything I do or say.
Gods blessings to anyone having to be going down this road.
Suggestions that helped me:
Google every Alzheimer dementia site, learn everything you can.
Watch you tube videos about the brain deterioration .
Get your Durable Power of Att. Papers ( medical and financial)in place now. He was very conflicted about this but I insisted.
We have conflict over even the simplest of things because he controlled every financial decision. Any question I ask about money or planning is met with suspicion, he's slightly paranoid and angry he can't control everything any more.
I am having to relearn how to communicate, learn how to get things done that he always did, I now manage our properties, our household, maintenance, our check book, investments, etc etc etc...everything....
Just keep telling yourself this sentence over and over. His brain has a disease. He cannot help and cannot understand some times...
Other days he's sharp and articulate....then ya get back into that teeter-totter of
communication.
I'm desperately praying for God to give me wisdom, patience, and deep compassion , taking away my anger and resentment. Pray pray And pray. Also counselling helps if you can find the time.
God bless...
In most cases there is no charge for this if there is no transport to the hospital.
Caring for a spouse or SO completely changes the dynamic of the relationship.
As a married couple you have been intimate for years.
As a caregiver the intimate relationship changes and it is a "new" intimacy.
You both have to deal with that change.
I suggest, if he is no longer getting treatment for the cancer that you contact Hospice he would qualify based on the cancer diagnosis.
If he still wishes treatment for the cancer he may qualify based on the cognitive decline.
With Hospice you would get the supplies and equipment that you need to help him and help him safely for both you and him.
A Sit to Stand was a great help for me. Later we switched to a Hoyer Lift. Both enabled me to safely care for my Husband.
IF he falls do NOT try to get him up yourself. Call 911 or the non emergency number and ask for a "Lift Assist" the paramedics are trained to properly, safely lift or help someone up off the floor. If he is not hurt and there is no transport to the hospital in 99.9% of the time you will not be charged for the call.
(some areas contract with EMS and in those areas you might be charged. Call or stop by the Fire department or Village Hall and ask. They also like knowing where someone that might need extra help resides. Some people have a Fire Department Lock Box set up so that they can get in in an emergency.)
I based keeping my Husband at home based on 1 thing.
If it was safe for HIM for me to care for him then he would remain at home.
If it was safe for ME to care for him then he would remain at home.
If at anytime it became unsafe for either of up I would have had no option but to place him.
I thank the help I got form Hospice and the VA that that never became a choice I had to make.
You grew up sort of knowing your parents would decline and you would need to watch them decline.
Your spouse? You promised to love, honor, etc ."in sickness and in health." When you can't make them better, you feel like you have failed. You want to do anything you can. The problem is, eventually you will realize there is nothing you can do. You need to take care of yourself. The most valuable resource they have is your ability to advocate for them.
I am responsible for my 68yo husband with numerous ailments, including dementia and heart failure and a seizure disorder -- fortunately, if I dare say that -- the heart failure will take him before getting to the point of needing memory care.
He's fallen several times and it is very difficult to get him up. He has to do it himself or our son (who lives in our basement) helps him up. If I need to, I will not hesitate to call the fire department for help. I hear calls like that come over the scanner frequently.
I am also bearing the brunt of responsibility for my 91yo father who is actually in excellent health but I can tell his memory is starting to go (he acknowledges it) and he was recently scammed out of thousands via Facebook (he is naive and trusting). Dad is five hours away so any visits have to include my husband (because he refuses to stay home and have someone be here with him when our son is at work, nor can I afford for anyone to come in). I now watch dad's email and Facebook page so I can catch any scams. But I really need to visit his banks and get them to convince him to give me POA now (instead of waiting until he is unable to communicate) and can't do that with my husband along for the trip.
Call 911. I have. Nice guys too.
And I do believe that the issues are basically the same when caring for parents or spouse, but there are also some vast differences, just because of the nature of the relationship.
Please don't hesitate to bring up any of your concerns/questions on this forum, as there are a great bunch of caregivers who if they can help in any way with their responses will.
And make sure that you're taking time just for you as well, as you matter too.
May God give you the strength and patience you will need for this journey that you're on with your husband.
I hope you have family or a support network. While that can be unpredictable it is at least a contact help. Wishing you the best.
I had to do that when my dad was dying of cancer. A poorly-trained caregiver allowed him to get out of bed to go to the bathroom, and while we were able to get him off the toilet and into a wheelchair, we couldn't get him back into bed. I called the fire department, and they scooped him up, put him back in bed, and went on their way. It was 2 a.m., and they never even woke my mother sleeping in the next room.
Bless you and your husband. I'm sure it's a very different experience to care for a spouse, but I cannot speak to it. My husband haven't reached that point yet.