I have started this thread and deleted it several times, as I don’t want this to be about me, but I need words of wisdom from other than family members. My husband was diagnosed with a brain tumor 2.5 months ago. Needless to say, this came as a shock as he had no symptoms until a couple of days before. I have now become full time caregiver to someone that was working full time and working out 2 hours a day; today he is in a wheelchair or bed most of the time.
Now that radiation is over, we were able to get him to inpatient rehab with the hope that he can get stronger and somewhat more mobile. While i hate to admit it, I am looking forward to nights off from care, although I will still stay with him most of the daytime hours. At least I can leave knowing someone has an eye on him while I have an appointment or run errands. My back with enjoy the break of lifting and moving him for the time he is here. Family has been great with helping me get him to and from treatments and helping with meals, but truthfully, I am worn out. I have gotten angry with him when he won’t turn or sit up when I need to change him; I know he isn’t doing it on purpose, but I have lost it a few time.
We are in for the long haul, I just need to know how I can keep my sanity and a happy home. I feel like this is different from caring for an elderly parent, but I know it probably isn’t. I am not one to do support groups, and really don’t want to hear how bad another family with the same cancer is doing.
I think what I am looking for is how to care for a spouse and what others have done to get through these awful times. Our kids have been great by coming in to visit and help as much as they can when they have toddlers and a baby at home. I hate burdening then as I know this is also a lot for them; they weren’t suppose to most likely lose their father so soon. The GK know that he is sick, but not the kind of sick a medicine will fix or that they can catch. The 4 year old just asked last week what to die means as she had seen Lion King at a friends house; she then ask if my husband was going to die like Mufasa. My daughter still isn’t sure she truly understood, but she was asking the right question.
@snowball please know…I’ll be thinking of you with very positive thoughts.
We have actually talked about this in my family. I think I would be reaching out for some hired help to give you some assistance. Depending on the prognosis, he might be eligible for some kind of palliative care…or hospice. I know people think of hospice as an end of life thing, but it can be provided and sometimes can last a year…or longer. The resources and help they have is amazing, and helpful not only for the patient but also the family.
Perhaps speak to the social worker at the rehab place. They can be very very helpful with resources. And might be able to give you good guidance.
I’m so sorry, my mom was my dad’s caregiver for many years (Alzheimer’s) until she got cancer at 70 (complete health nut, exercised daily, ate clean). My sister and I used to joke about what would happen if mom got hit by a bus, we learned what would happen 4 months after her diagnosis. If you can afford it, get paid help. Caring for my mom while caring for my dad was tough, my kids (ages 12 - 19) were amazing (we found him a caretaker that turned out to be bat poop crazy but it took us a while to realize it), she wanted one day off so they took turns sleeping at his house. No guilt, self care. My mom would be weak from chemo and my dad would have toileting accidents so she’d be washing the floor at midnight. Ask for help.
I told my mom that when she is not able to take care of herself, I would hire help to take care of her. I told my kids the same, that I would want them to hire people to take care of me because I would want them to be my daughters rather than my caretakers.
My sister’s mother in law got Alzheimer’s 10 years ago. Initially the FIL thought he could take care of her by himself, but he was exhausted and was not able to leave the house. He finally agreed to have some help, initially during the day for few hours, but now it is 24-7. He was much better at coping with his wife’s illness when he was able to play golf every once in a while and visit his children/grandchildren.
I am very sorry about your husband.
Get help and take care of yourself. You cannot do everything and you will need a break for when the big decisions and the big moments come, the ones that will require all your energy and focus.
Find an outlet for your feelings whether through talking to other people or exercise or losing yourself in volunteering or movies or whatever. (yes, I want to say a stiff drink.)
I agree with everyone here about your getting some paid help. It doesn’t have to be for 24/7, but it might be for, say, four hours a day in the afternoon so you can have a breather, not to mention a life.
Also, reach out to your local friends for emotional support. You need them now, and you will absolutely need them later.
Friends in similar situations have benefited from things like a meal train (so they don’t have to cook everyday) and someone to coordinate rides to things like doctors appointments. If you are members of a religious congregation, perhaps reach out there. There likely are a lot of people who would be willing to lend a hand.
Many, many hugs to you. This is really tough to do alone without at least some respite.
Much depends on his strength level which of course will vary and hopefully improve with any rehab he receives.
Try to establish a routine. Meals, nap time etc. which can give you some free time. So if you know he’ll be sleeping for a couple hours for example you can go do errands. Remember this is a two way street–if it’s going to work you need to stay sane and being “on call” 24/7 will not work. Do not get run ragged with constant demands.
Get a “button” he can push if there is trouble while you are out. Sign up a neighbor (or two) who can check on him (if needed) if you are out.
Depending on how able he is to sit up in bed etc. consider a hospital bed that is motorized to put him in sitting position. Otherwise it is too exhausting and frustrating–you’ll hurt your own back. I’m still kicking myself that we didn’t do this for my dad. It would’ve made a huge difference. And saved a lot of misplaced anger.
Make ahead and freeze as many meals as you can. You’d be surprised how fast meals can come together if frozen in single portions–that includes veggies, starch and meat. Freeze all individually and you can make any combo you like.
There seems to be a solution these days to almost any problem you have–medical aids, wheelchair/walker aids. Goes from cup holders, trays, stability aids. The right one can save your sanity. Don’t be afraid to ask for suggestions. (My dad always wanted a glass of water with him–I attached a bike water bottle holder to his walker–he was thrilled).
Utilize any professionals that come to your house. Learn from them. Ask questions. If someone is able to turn your H, get him out of bed easily etc. Watch and ask what they are doing to make it easier. Anything you have trouble with ASK! There are a ton of ‘tricks’ to move people, aids that can be used etc. That includes nurses, PT (huge to move people), whoever.
The internet was a godsend taking care of my dad–videos for so much. And a lot of helpful forums–no need to go to a “support group” as such but there is a lot of support out there.
Adding: A great thing is a baby monitor–saves a lot of angst. It’ll save a million steps wondering if your loved one is awake or needs anything. An intercom would work but you don’t necessarily want all conversations being broadcast.
First of all, hugs to you. I have not been through this, but I watched my parents and my in laws struggle with caretaking.
You described getting upset with him, even though you knew he didn’t mean to make things difficult. Normal. I saw my dad do that with my mom & my MIL with my FIL. They refused to get help for too long, though, which made those moments occur more frequently than they would have if the caretakers had allowed someone else to help out. Definitely hire some help, if possible. In addition … If you belong to a church, ask them if they can provide some sort of help. Ask friends, if you have friends you feel comfortable asking. My dad was more than happy to help his good friend’s wife by staying with his friend a couple hours a week so his wife had a break. Actually, my dad was pretty good at allowing my mom’s friends to help him - but my MIL, who would always help everyone, refused to ask for help when she needed it. Don’t hesitate to ask.
Hugs to you @snowball - your families life changed literally overnight.
A very good friend of mine is in this caregiver wife situation for her husband.
As others have said, outside help is a must. She finds time to go away for a few nights every few months and while she worries about him the benefits of a break for her helps them both immensely.
Another suggestion is for you to see a therapist or grief counselor. You need someone to talk to who is not family. To let your emotions and frustrations out.
I really can’t add anything to all the good advice you’ve been given, my heart goes out to you. You are right this is different from dealing with a parent. It’s all right to be angry or scared. Make time for yourself.
There is so much good advice here, I can’t add anything from personal experience. But a dear friend lost her husband to a rare disease a few years back and recently wrote a memoir about how she coped. One of her big points was that having paid help allowed her to remain in the spouse role rather than becoming entirely the caregiver – thus preserving their marital relationship.
If you have time to read anything – it might resonate as thoughts from a kindred soul. It’s on Amazon, titled In Each Other’s Bones: A Memoir, of Love, Loss and Living. I don’t know if I’m allowed to post the link, but you can find it by that title.
Second the idea of accessing hospice. He can continue meds and treatments for issues not related to the hospice diagnosis. If he still is having treatment then palliative care can help.
My caregiving relief was an art class and a tai chi class per week. It made a big difference.
Second the idea of getting a therapist/counselor.
Finally, I am not really a group person but I have found caregivers’ support groups to be very helpful. There is usually a mix of veterans and newbies with intense issues and the tone, I think, tends to be positive and geared to problem solving.
I have not had to take care of a spouse, but have had long-term caregiving responsibilities for a family member in the household. It convinced me I wasn’t cut out to be a nurse. Or perhaps I wasn’t cut out to be a nurse 24 hours a day, 7 days a week.
I would add to the suggestions above that you seek help with things that do not involve direct care. If they are unaffordable, ask for them as gifts from others who want to help. I am talking about things like weekly maid service or landscape maintenance or meal or grocery delivery or dog-walking. Find ways to take other things off your plate so you can build in more time for yourself. Recruit others to accompany him to medical appointments that are not the “big” appointments but are more routine tests/scans, etc., — transporting a wheelchair-bound patient to and from appointments and sitting in waiting rooms can eat up so much time. Go get your own hair done during that time.
Again, I am sorry for the heavy burdens you are carrying.
