I'm the caregiver of a caregiver...

My 79 year old mother in law is caring for her 80 year old husband with a form of degenerative Parkinsons, I am the 'on call' person when needed to run errands and drive them to certain appointments, help with chores etc. At present I don't work as I need to be available on the days my sister in law works herself and finding a job in a country area where I can designate the days I work is near impossible. Lately I discovered that my sister in law has found it too difficult to watch her father deteriorate and doesn't visit as much as she used too, which I understand but I'm concerned that this is making my mother in laws isolation more acute. Can care givers please tell me what I need to do to help my mother in law to stay connected to life.

I commented to Leonine1 privately, but please everyone reread that post. It is one of the best I have ever read on this forum and extremely useful to share with friends who maybe want to support you but don't know how.

First if all, I am impressed with what you know and that you’re smart enough to ask for help. There are some good suggestions, but I would add to call around any senior service agency, senior center, meals on wheels in your area. They may not have specific answers but they may know someone who does. Also, check in with local Cancer Assoc. chapter to see what kind of advice they regarding recovery. Take advantage of any free services, volunteer help, etc.

Caregiving is not easy and it’s a lot to ask of two people so very young. Be careful not to take on too much. And let your SO know that it’s OK to say, “No, it’s too much.” You too!!

Are there any other family members in the picture? Is there a religious person -minister, rabbi, etc. that you can talk with? Make a list of issues that need to be addressed- determine who pays his bills? Is there a will, POA, health decision maker? Sources and amounts of income; names of doctors. perhaps go to local dept. of aging to seek some guidance. Keep talking with your so and let him know [often] that you are there to give him support, try to see an attorney if you can [perhaps lega aid if there is one available and there are limited funds]. Understand that there are people around who are willing to help - don't feel like you are isolated without anyplace to turn.

I greatly appreciate all of the helpful comments, advice, and knowledge! We wouldn't be able to do this without some help/support from someone and I'm so thankful to have found this site ❤

@Chloe1999
I was a younger caregiver ... not as young as you, but younger than some. We're all different, but I can relate to what dmasty said more than all the others. My life wasn't my own for 5-1/2 years. If I wasn't with my dad doing something with him or for him (which was the majority of the time), I was on call. It was my job, 24/7, 365/5.5. One thing I wanted and needed more than anything else was sleep. I missed sleeping so much. I needed for people to not comment on my weird sleep hours. I would be up at all hours of the night doing things for my dad .... or he would keep me up all night doing whatever he was doing all night. So I slept when I could and if I could. I got really, really tired of the negative comments and feeling like I had to justify sleeping. And people wanting to make plans and make you commit to certain dates and times never turned out well. Instead of feeling like it was a good thing, it felt like another demand on my time. If something came up on that day at that time (which was almost a sure thing) and I couldn't or didn't feel like going, the other person got pissed or hurt, and now I was worrying about them and how they felt. So I would go. How I felt and what I needed, didn't matter again. Planning a surprise event of any type and expecting me to participate would have been the worst. (No offense anyone.) So little of a caregiver's time is spent doing what they want or need to do for themselves. Surprising someone with an event that sounds good to you and expecting them to be happy about it - you've denied them the option to bow out gracefully. You are essentially demanding more of their time, and demanding that they like it. For me the best companions, the best friends, we're the ones who were spontaneous and willing to go out and do things with me at the last minute. Or who would make tentative plans with me with no expectations, and no guilt trips. They really cared about me. They were the good friends. No surprises, no judgment, no dates, no demands. Caregiving is a temporary thing. It's very demanding we very underappreciated. I strongly urge family members to not do it. No one will thank you for it. It ruins your other relationships. Most of the time irreparable damage is done within families. Not only do you sacrifice those years of your life, your health is impacted in irreparable ways. It can take years off your life in the end. Nothing good can come of it. I'm serious. Nothing good can come of it. And the family caregiver loses. Big time. I know people are saying out loud how horrible I am. But inside, if they are truly honest, they cannot deny it. Don't do it. No one will thank you. No one will even acknowledge your sacrifice. Or how much work it is. When you try to explain, they will blow you off.

My husband helped me immensely when I was caring for my Mom for 4 years by not complaining and not making me feel guilty for being gone ALL the time almost. He also listened to me complain and complain and tell horror stories. I will forever be grateful to him for this generous gift of giving me the time to do what I needed to do (for me) for my Mom. But we are 40 years older than you and your boyfriend. Not sure how old his Grampa is but this could be a long journey and you are both very young to have this weight. Please keep us posted.

Hi,
If you can’t go out, have your date at home! Surprise your SO with candlelight dinner on the patio over t.v. dinners if you want!
Add some spice to your life so you don’t feel burnt out all the time.
I can tell you don’t mind taking care of gramps all the time, you just want to reconnect now and again.
Its just like parents of young kids, you gotta keep the magic alive, even if the best you can do is make sure you have good locks in place. (And really isn’t a lot of it the thought of being together, joined in mutual regard for each other and trying to make it easier?)
Besides that, without turning into a shrew, help your SO take care of himself. Our job is so much more difficult when we’re overly tired or not eating right, but when there’s stress we instantly take care of the situation and forget about our needs. You have the advantage of being there and seeing if he’s pushed his limits too far.
Good luck to you guys. It’s going to be a long hard road but if you continue to show this kind of caring for your relationship you’ll do ok. And you’ll have each other over the hard parts.
Charlotte

Grandpa may be resistant to pain killers but open to other treatment/coping options. A heating pad or the gel packs that can be cooled in the fridge or heated in the microwave can reduce inflammation and pain. Water walking can reduce pain and improve muscle strength in case Grandpa needs a hip replacement later.

For a lot of older couples, the wife managed the majority of couple's social life. In those cases, losing your wife also means losing your bridge to friends and family. Since Grandpa is talking with you, maybe you could help him reconnect or find some new friends. Social interaction reduces pain and the grumpiness that comes from living in pain.

Would Grandpa be interested in Senior Center activities? If he develops a group of friends there, that could leave more couple time for you and SO. Does Grandpa still live in the area where he went to high school or serviced as a police officer? If so, are there old friends he could reach out to (sometimes we lose touch when life is busy and enjoy reengaging these relationships when we're older and have less busy lives)?

If there are things where you ask for Grandpa's help or advise that can improve his mental attitude too. Grill hamburgers? Watch a pot roast cooking? Maybe how to check a car's tire pressure?

I would talk to the cousin about either having a part time caregiver coming in so you two can have some time for you as a couple. I also liked Margaret Mckens’ idea of having another couple or friends over, this is something that grandpa can join in with. It may distract him from his pain some, try and draw him out by asking him to tell stories from his past. You may be surprised at what he could tell.

Dear Just, this sounds really tough. I can understand how Grandpa still feels in charge of himself and you two young kids, and how that increases the problems.

Like Cwillie says, he needs to be assessed. Perhaps the best way to make that happen is to have a heart-to-heart with cousin who handles the medical stuff. Tell her what's really going on, and put the job of getting him to a doctor on her. The advice on this site is usually to write to the doctor first (and you could do that) to say what is really happening. Grandpa is going to say everything is fine, and the doctor needs to know the real stuff before the appointment happens. The doctor can't talk to you without the HIPPA, but if there is some information first the doctor should treat the appointment differently, ask different questions, give different information. If you agree with cousin that you are going to write, it makes it more likely to happen.

One 'dating' fashion that has changed since I was a young couple is to give dinner parties for friends. It doesn't have to be all that posh, but you invite a couple of people around to dinner and to spend the evening. You could even make it even more old-fashioned and say 'bring a plate', particularly if you make it six to sit down. This stopped being 'normal' when TV came in and people wouldn't leave their favourite programs, but now that TV is all on demand you should be able to set it up. Chances are that Grandpa would eat with you, on his best behaviour, and then disappear into his own room. If you wanted to mock it up, you could ask for fancy dress (50s or 60s) and then play cards after dinner (canasta was the go). It could be fun to try.

Lots of love, Margaret

My SO's cousin handles all of the finances and medical issues. She is the only one we have helping us with that but that's all she does. She's never really around him for more than about 30 minutes to an hour every couple of weeks.
Right now he is going through radiation for prostate cancer. His mood has started to shift more and he isn't sleeping very well anymore. He's very short tempered with my SO and incredibly impatient with everything but it's manageable. The relationship he has with his grandson is difficult to get around. He feels like he's still taking care of his grandson so it's difficult for my SO to have the difficult conversations such as what he needs, what's been going on with him, resent mishaps, etc.. So he usually tells me whenever he's fallen or can't sleep and pretty much everything so I'm playing messenger here. He has a bad hip(gun slinger's hip) because he's an ex cop and it really bothers him but we can't get him to talk to his doctor about it to get any pain medication. His cousin goes to some of his appointments with him(as her school schedule permits) but she doesn't see the severity of his pain because he's too proud to show it.
My SO and I don't leave the house after work because he calls every 20 minutes(no exageration) and it's beginning to put a strain on us. No dates of any kind because we always end up leaving half way through our activity(movie, dinner, meeting with friends) so we've slowly just given up. I feel really guilty that this has put as much strain on us as it has because we have no problem doing whatever he needs. Any ideas on how we can get through just one date?
My SO's dad is in the picture but he's not a good character so we don't trust him alone at our home.

Tell us more about grandfather's health and behaviour, also where you are up to about sorting out the Power of Attorney (POA), HIPPA (authority for doctors to talk to you without privacy concerns), will, end of life care directive, Medicaid spend down details, and any other paperwork. You are not completely alone if you share the details with all the caring, experienced people on this site. It's anonymous and free. You and your guy are too young to worry all these worries on your own. Best wishes to you both.

The only way for your SO to feel less burdened is to lessen the burden, and take time off from care giving to refresh and recharge.

That means he needs to get outside help for his grandfather so he doesn't have to do it all. So, follow cwillie's advice above. In addition, if grandfather is a vet, he's entitled to vet's benefits; you call a VA office to find out what benefits are available. Also, look online for a local support group that he can attend and find resources.

Has the grandfather appointed someone to be his Power of Attorney (POA) so that person can act on his behalf when he can no longer manage his financial affairs and make medical decisions? If not, it's time to do it while grandfather still has the faculty to choose his POA.

You need to have his grandfather assessed to see what kind of help he needs and what might be available to him, he should check with the doctor and/or local agency on aging.