Anyone else caregiving for a spouse, with work and kids on top of everything else?

roxbob
Wow! I'm so sorry this happened to your family!! I don't have any advice but I just wanted to let you know that I hear you, and that you aren't alone. Please stay in touch and you will find that you have friends here.
My situation is somewhat the opposite as I am a couple of years from retirement (which I have SO been looking forward to) and am now in the process of adopting grandchildren, the youngest of which is 6 years old. Good-bye retirement!!
But I have found common ground with others on this site, even though 99.9% have very different circumstances, because, after all, we are all caregivers! I have gained so much insight from the wisdom of other caregivers on this site, and I find the compassion and empathy to be very uplifting spiritually.

Hi roxbob - Welcome to the forum. I am so sorry for your situation. That is really really tough having to play all the roles without a partner sharing the burden, but instead adding to the burden. Do you have anyone helping you with your wife? or your kids? Also you're too young to not have any intimacy in your marriage. So so sorry.

There was someone in a similar situation as yours. His wife, not very old, in her 50s I think, also had a stroke and couldn't do much. He had to run his business and took care of his wife. I don't remember if they had young kids, or any kids. But he was so burned out and was at a breaking point, and didn't know what to do.

He ended up having to put his wife in a nursing home so he could work and take care of both of them. He contacted an attorney who helped him get his wife qualified for Medicaid otherwise he couldn't afford the nursing home for his wife. It was tough but he did it. He could go back to being her husband instead of her burned out caregiver. If you're interested in reading his posts and all the replies that other posters wrote to him, I can try to look for the link.

Let me know.

I don’t understand the medical situation well enough to know that this is an appropriate comment, so please forgive me if it’s not. I can appreciate how very very difficult this is for you. I can also see how difficult it is for your wife, whose life has been destroyed too. My sister had a stroke at 28, two children under 5, she’s now in a wheelchair at 75. However I don’t think she had the ‘emotional blunting’, and the marriage has survived. She was very determined, after a couple of years went back to study to upgrade her accounting qualification, and she still does accounting work (one handed – she’s paralysed down one side). I am wondering if counselling or therapy of some sort could help your wife. She has a lot to lose if you can’t continue with this, and perhaps she could help herself. It does sound as if you can cope with the caregiving, if the emotional stuff can improve.

Hi Roxbob, I don’t know if you are monitoring this or not, but here is some more. I had to do a trip to the city over the weekend, I went to see my older sister and BIL (who is currently in the last stages of cancer, and slightly less agro than usual), and I asked her about her own reactions when she had much the same event as your wife. She probably came across as even less sympathetic than I was in my post to you (our family is all a bit on the blunt side). She said ‘It was all a disaster, but I had two little kids, giving up wasn’t an option’. She asked if your wife could speak (and I said that I guessed that she also had at least some aphasia), and if she could walk (and I said I thought yes but with aids). My sister’s own aphasia has improved over the years, and we all learned to be patient – to guess the words eventually, but not too quickly. Her walking has deteriorated over the years, and I think it may have been better initially than your wife's. Her right hand arm and leg has always been paralised.

Just about the kids – their school had a head lice episode, following which the two boys had number 1 hair cuts all through primary school, because coping with the potential laundry was just too hard. Family life certainly wasn’t easy. My mother went to help initially, but my BIL is a very abrasive personality (so was mother, and it was also a very stressful situation), and mother ended up home in this state after not too many weeks. After that, mother used to go for a visit every year, to do all the mending that had been collected up.

They tried to put my sister into a Sheltered Workshop for the Disabled, when she first recovered from the stroke. She still gets angry about it. I have enough experience of all types of supported living to understand the problems of interesting your wife in aged care support groups. Unless she is running it, it isn't a good idea.

My sister went on to give her own take on things. She said ‘Get a Life’ (in caps - like I said, blunt). She said work out what you can do and make yourself improve until you can do it.

My BIL started up his own business after she qualified as an accountant, and she did the finance/ accounting side of it (as well as her own small practice). Being involved in the business together probably helped to keep them together. They are now very well off indeed. She said that the stroke had destroyed her life, and our younger sister (who isn’t well off) went off her tree about how she wouldn’t mind having the money they now have, she didn’t see the situation as ‘destruction’.

My sister also sent her very best wishes and hope that things can improve for her and for you. And so do I. I'm sure that younger sister would too, but she isn't in this loop!

I would love to hear back from you, Margaret

Hi Roxbob! Thank you for reaching out to this forum for support and advice. It sounds like you and your entire family have their plates full.  

Each year in November we celebrate our nation's caregivers with National Caregiver's Month. A time to bring awareness to some of the challenges caregivers of all ages experience and bring to light resources they may not be familiar with. Have you considered getting some respite care both for your wife as well as yourself? I would encourage you to reach out to a local advisor who will be able to offer you local resources you may find helpful now and in the future.

Hang in there! There are resources for you.

Hi Roxbob. My situation is a little different, but I have the same emotions as you express. I am 57. My husband is 72, and he was diagnosed with Alzheimer’s last May. Of course, symptoms began several years prior to that. I also have in my home my 93 year old father who is healthy and a Godsend to me, and my 28 year old semi dependent son with PDD. Thank God he at least holds a job. But due to the three of their limitations, I am left holding the bag for everything: doctor appointments for three men, two do not drive, my Dad and my husband, the house, the yard, fulltime work, trying to earn my own retirement and finances. It’s physically and emotionally exhausting. And my husband tries to get me to go places on the weekend. Weekends I try to catch up around the house and get a little exercise. And he doesn’t get that I am doing everything which leaves me no energy for his “fun ideas.” My only coping mechanism at present is this group, an online therapist, and escapes like hobbies or going to the gym. It’s very lonely. I’m healthy and 57, and feel like I have no life but caretaking and work. Recently got together with two girlfriends from high school for the first time since high school. It’s very lonely and overwhelming being everything to everyone and doing everything for everyone. I hesitate to get help with the house and yard because of the exhorbitant upcoming Alzheimer’s care costs. I just feel stuck, lonely and overwhelmed. Best of luck to you and your family. I truly hope you can find some joy and relief through some type of healthy escape for yourself.

Hi everyone, I don't have the small kids because I'm 57 but I care for my bedridden husband and work full time. Yes, like you all I have to do everything. We have a 26 year old daughter who still lives at home and helps me with companionship. My husband hasn't talked to her for months because he says she disrespects me and is lazy. To me he's the jerk when it comes to them. There's peace in the house, just sad to me because they don't talk. I never thought being at work would be my resting time. What makes me sadest is that I feel for the rest of my life, I'm going to be changing my husband like a baby. He can't walk and I feel didn't try hard. Enough to maybe he could with at least a walker. Our lives changed 9/15/18 . He Walked in to a surgery appointment to have a kidney removed. Long story. I'm hanging in there, lucky my parents are close for support. Just sad, busy, lonely for that husband and wife relationship. It's more like taking care of another kid. No more going out together, never going to our ocean spot again, never going anywhere together again except a doctor appointment..I had to vent here.

Bless you. By all means an online support group is better than nothing but the ole real personal contact that comes from a in person support group is going to be a much more realistic, valuable resource for you. Even if that means only the personal contact of a counselor for yourself. Massage is a good way to release tensions that may be being manifested in you physically (which you may not be aware of). Good job reaching out. Prayer or relating to that which you believe has given you what you have and remembering the blessings you do have are a must.

How are you working cargivers doing? Working at home and work. I have to do everything to Roxbob and I'm sure others. Can't go anywhere for more than one over night. Couldn't go to my aunt's funeral because I would have to be gone for 2 nights. I'm the only one that can change him. I understand but maybe a hired care once in a great while?? Anyway, I hope your all hanging in there like me and doing things that make you happy even if it's something small like relaxing with a clothes catalog. I hope someone answers back. Hugs