Hello, a while back I shared how my wife and I were dealing with her mom’s declining health as a result of frontaltemporal dementia. The advice was overwhelmingly helpful. This week, after months and months of precipitous decline, we moved her into a great facility. But now that our roles as caretakers are different and largely off our plates, I just feel numb. I don’t know what to do with myself without all the myriad caregiver tasks that we had absorbed into our daily existence. I can’t clear my head from the persistent awareness of another person with a severe disability needing something at any minute. I have a lot that I could throw myself into. I’m in law school, I have two wonderful kids, and finally the time with my wife where we can just be us. But I just want to do nothing, and I don’t know how to find the energy to help my wife navigate the feelings of grief, guilt, sadness, anger, and loss that come with a loved one moving on in this way. I absolutely want to be there and I’m trying, but as I said, I just feel like a person walking through a silent movie now. Until she moved, my mother in law lived in an apartment that is the bottom floor of our house. Our front door has a large glass pane in it, and her method of communicating that she needed something was to stand at the door and press her face up against the glass. It was at first frustrating; then accepting. Now, I’ve realized I have an involuntary habit of looking at the door whenever I pass to see if she’s there needing something. All I ever wanted it seemed was to have my house back from this sense of constant need and imposition. Now I find myself looking at the door and seeing nothing and thinking, without that urgency looking in at me, I don’t know what to do. And I realized I became so used to it that now, in its absence, I miss it.
It takes a while, but that high-alert sensation will settle. Give yourself total downtime for now, and encourage your wife to do the same. Have you worked out a visiting and errands schedule for MIL? - don't let that grow out of proportion to compensate, will you.
I hope and pray that now you and your wife will take time for each other, and start to do the things that you enjoy. Things that perhaps you couldn't do when your MIL was living with you. God bless you both.
Seriously, though, you can't turn off all those ingrained responses to your mother's needs the same week she moved. Give yourselves time to decompress. It may take months, but it's OK.
Give yourselves time. It is a part of the grieving. Dementia is as they say the long goodbye and this transition is part of it.
You obviously moved her for her safety, your wife’s safety as well as yours and other members of the household. There is nothing to feel guilty about.
If you can plan a getaway get to know the family again without having to worry about caring for anyone but you, your wife and kids. Be “selfish” for a day or so.
Your wife's caregiver duties are not over; her caregiving duties have just changed. Her job now is to advocate for her mother to see that mom is getting what she need and to solve problems between mom and the facility.
Best wishes.
You're still in caretaker role so ease out of it by doing caring things for your wife, your friends, your neighbors. Believe me, this helps. I lost my caregiver role 4 months ago and I am still feeling my way, but helping others has helped me tremendously. Last of all, enjoy your new independence - sit in it - even if that means just staring at the walls and giving thanks for all you have.
You have a family with small kids, are in law school, and caregiving duties for a MIL? Wow! Even Clark Kent wouldn’t be able to do that. Impressive. I have no advice or suggestion; just admiration. I thought I was a superhuman with my caregiving duties and a full-time job, but obviously you beat me to it
Some depression is common as you suddenly question your own usefulness and worth. Your wife probably feels even more guikt and sadness than you do, and you need to help her through this time as well.
Give yourselves time. Yes, you will miss being constantly "on-call" and important to someone's daily existence, but you will relax over time. Appreciate the return of calm and reassure your wife that het mother will be much more safely cared for at her new facility.
Senior Homes are not a pleasant place to live unless you have no other choice. They are ways understaffed.
If you decide to move her back in and have respite care where her insurance would pay for an Aide to come clean her up by shower, bath or bed bath 3 times a week, a Nurse will come to your home and check on her 1-2 times a week and if her husband was in the Military, you can check with VA and she could get up to 30 hrs a week Caregiver help.
I would suggest a different way for her to tell you she needs something than to stand in the glass.
You could install a Nest Camera or a door bell for her to ring when she needs something.
Also, the person is NOT her mother and her problem. In laws belong to each person in the marriage.
Oh, the adventures that await you!
Stage 1 - Denial - the sense that this can't be real and isn't really happening.
Stage 2 - Anger - the sense of feeling frustrated and ":this just isn't fair"
Stage 3 - Bargaining - the efforts to bring back what was "normal." These efforts do not work.
Stage 4 - Depression - the sense of sadness that comes when realizes that the loss is permanent.
Stage 5 - Acceptance - the sense of peace and adjustment to living with what is now reality.
You can probably see in yourself which stage you are at - and probably for each member of the family. Be gentle with yourself and your family members since each of you may process this new family situation at a different pace. If might be helpful to see a counsellor to help with processing your feelings as you navigate this new family dynamic. I like to start with a counsellor from my faith since we start off from a similar world view or perspective.
You're mourning the loss of your 'normal' and in time, it will pass. Mom is in a place that can better care for her. You have a very full plate--as you know.
Don't feel guilty, you went above and beyond what was needed and now you see that a different kind of care is required. And you embraced that and followed through. You show your wife attention and affection as she is also mourning the 'loss' of her norm.
Give it time and you will adapt to the new situation and hopefully even see MIL being happier and adjusting well.
Bless you, you are truly one in a million!!
Humans are creatures of habit.
You and your wife got used to being in the caregiver role and planned every minute of your lives around MIL's needs and wants.
The two of you adapted to this life and it became habit to you.
It will take a while for you both to adapt to a different lifestyle that isn't planned around MIL's needs and care.
You say you're feeling numb right now, but what you think is emotional numbness can actually be relief in a sense.
Start making plans. Take your wife and kids out to dinner once a week. Take a vacation to get away for a few days. These are things you can do now, and enjoy finding what out what life has in store for post-caregivers.
Give yourself some time to adjust to new routines. It’s amazing how easily we adapt to things, good or bad.
You got used to your MIL living with you, even though it hurt and you wanted it to be over with. You adapted to the imposition. You look at the door now, where she'd press her face up against the glass when she needed something, and you feel a sense of loss. Like you need to DO something, but there's nothing to do. You're struggling to find your new normal now. A big part of your life has changed and your job has been eliminated. Overnight; gone. What do you do now?
You carve out your new 'normal' now. You create a new job for yourself, a new position that contains pleasant tasks you enjoy doing. You may even like to have a routine. In the morning you do a crossword, then eat lunch, then garden, then take a shower, etc. Late afternoon round of golf. Whatever sounds good to YOU is what you should pencil into that schedule.
When my cousin lost her parents after decades of caring for them, she was totally lost. She'd never had children, and considered her elderly parents her children. When they were gone, her life was empty. She had no idea what to do with herself. I told her the same thing I'm telling you: CREATE your new normal. Carve it out of a blank slate and start over.
It's never easy because with age nothing is easy to start anew. But it's doable, my friend. You are a good man with a big heart. If you feel inclined, you may want to volunteer some of your big heart to the children's cancer ward or even your mother in law's facility that she moved into. When we feel like we're giving back, we never feel a sense of emptiness or uselessness anymore. We feel fulfilled again as human beings because we're giving of ourselves and that feels good!
Best of luck
Ultimately his grade II astrocytoma brain cancer became a glioblastoma in six and a half weeks. He bounced between hospitals and skilled nursing facilities, some of which were terrible. I realized he most likely wouldn’t tolerate treatment with radiation and chemotherapy. I had a very difficult conversation with my 22 year old niece as we discussed that he was worse after surgery, how difficult treatment would be, and that hospice would be a great place to get great care and comfort. The last seven months have all been about all crisis management, that included two trips to Chicagoland. He entered an excellent facility and has amazing hospice care. He doing the best he’s been since surgery. A huge load lifted knowing his was in a safe place and that hospice is where he belongs.
So now that I’m not putting out fires and directing care, I do nothing just about every day. My sleep has been terrible. I realized I’m finally experiencing the grief that I had put aside to get stuff done. This morning my counselor said it’s okay to do nothing as I go through my grief. Oddly enough today turned out to be a more productive day. Be patient with yourself.
I would say that counseling will help you sort the feelings- journal and talk.
Start small, this week 2 days a week we will ___ (insert a hobby or something you had wanted to do ) then 3 times a week, etc.
You were valuable and helpful but you still are- just in other roles as dad and husband. Taking time to slowly get into those roles is normal.
Like retirement or a move to another town- it takes time to acclimate. Dont feel guilty.