I am a 57 year old women who has been the primary caregiver to my mother, who is 82 COPD on oxygen 24/7. I have decided to to move in to be able to assist her more. I am aware of the transition that it will be tough, she is ready for help. I bought a 30 ' trailer to put on her property to allow for some space. I am nervous and scared all at the same time. I have decided to sell all my belongings and settle that the house is her space , she has agreed the yard and outside will be mine.
What suggestions and ideas does your experience suggest, I do to make this easier.
My mom is still strong mentally but not physically. She know that this is what is best as she would never give up or move out of her home.
I really appreciate any and all feed back.
Thanks Diana
I'm sorry, but I usually equate COPD with having a difficult personality. Is you mother easy to get along with? That will make it easier for you. You need to establish some time for yourself -- say, like saying you'll cook five days a week, but not weekends. Keep time for yourself every day. And if you are working, don't give up your job!!
Much luck to you as you make this change. I hope it is the right thing to do, since you are giving up a lot.
So, if the house is her space, does that mean you won't be doing the cleaning and laundry and cooking? If you are going to sell everything you own, why don't you just move into the house with her? Trailers are not usually insulated enough to live in during the winter and will be expensive to heat and cool. As mom's illness progresses, will she need more assistance?
Well, I wish you luck. And make sure you check on the legality of living in a travel trailer in your mother's backyard before you do anything else.
I finally had to use this tough love approach with my parents because they also refuse to move to a retirement village where they would have MORE freedom and MORE choices in their later years.
I use to help with the yard work, stopped doing that last year... if I have to hire someone for my own home, then my parents could hire someone themselves. Oh the guilt trips they placed upon me... but I stood my ground. Same with winter and shoveling the driveway, sorry I can't do that any more because of my own age related decline. But Dad was worried about getting their car out in case of an emergency.... ah, Dad, the fire department has shovels, they will be able to get to you in an emergency.
Therefore, before you actually move, think about these things. And whatever you do, do NOT quit your job.... you need to add to your own Social Security and Medicare fund.
Yes the guilt trips are many, I have also had to let sibling know that they are still needed and that just because I live with her, that they can drop the ball. They still don't do much, but I am finally getting my sister and younger brother to see that this is really difficult.
This is the hardest thing you are ever going to do. In the 3 1/2 years I took care of my father, I grew enormously. I had to learn patience, keep my mouth shut, and learn I wasn't the smartest one in the room. If you knew me, you'd know how hard it was for me. Now 2 months after his death, I feel so empowered, so proud of myself. I went the distance, I gave my Dad dignity and control to the end. Good luck we are here if you need us.
I think it's important to distinguish allowing your parent to control his or her own affairs and allowing him or her to control you. I'm happy to let my mother manage her own affairs. I'm not prepared to let her manage my affairs. I am working hard to not let her manage the way I do things for her. I don't appreciate being nagged or micromanaged, both of which she's prone to doing. I'll give you an example. We were leaving for the library a few weeks ago (me driving her car, which is easier than mine for her to get in and out of). She told me we needed to stop for gas. I was okay with her telling me this, as my sister had been the last one to drive the car, so I didn't know the gas was low. I told her I was going to take the back route to the library to avoid the traffic. She put in "After you stop for gas." I said very firmly "MOM!!!" Letting her know that she was pushing my buttons.
My sister and I have both told my mother that she is not entitled to play the "parent" card. We are adults and we are helping her out of the goodness of our hearts. If I were to give any advice to an adult child moving in with a parent, it would be the exact opposite of what kathyt said. I would say "Insist on being treated as an adult. If your parent starts speaking to you like you're 10 years old and acting like they're entitled to control your every move, call them out on it. Stand up for yourself or you won't make it through without a lot of bitterness, anger and resentment.
It is a wonderful idea to let parents have as much control as possible. The truth is, however, that many are no longer able to run the show. When it comes to dementia, reasoning is one of the first casualties. The best a caregiver can do is try to take over control silently so it doesn't rock the boat too much. This is easy to do with some things like paying bills, but harder to do with more personal things like medications.
I do know that we can't blame caregivers for wanting to control their own lives any more than we can blame care receivers for it. We can't expect someone to lose control of their own life and happiness so that the receiver can feel better. That is not a good trade-off and is actually very dismissive of the personal needs of the caregiver, who is often also a senior citizen.
Something I've noticed, and maybe it's just me, is that when advice is given to put more into the physical part of caregiving, it is usually given to a woman. I wonder if I have done the same. I wonder if it is we think women are naturally more serving than men. (Or maybe it's my imagination.)
That said, I often need to argue with her when she goes down a path that doesn't make any sense. She doesn't have full blown dementia but her judgment and memory are not what they used to be. I try to do it in a respectful way, but not because she's a parent. It's because she's a person. I talk to kids respectfully too, and store clerks, and everyone else. Hell, I even apologize when I accidently bump into my dog.
I sat her down this morning, to talk to her about it, told her I wasn't happy with it and that her other daughter who was here last night said, "I'm going call before I bother to come other again, if she's been drinking I just won't come over..
So I made her aware that she is pushing people away by her behavior. Surprising she acknowledged the problem, and stated she will work on it,heard it before, but maybe if I can get my brother to tell her why he doesn't come over she will do something.
I don't know sometimes I get frustrated, and other times I feel really bad, she hates
getting old she was always VERY independent.
you mentioned the need for each of you to have your own space. that certainly is important. but you also need to work on lowering your mom's resistance to receiving your help. since you are there, start off by cooking meals and eating together. let her get used to having you there. don't be too pushy at first. let this new dynamic in your relationship take root and become familiar. be persistent.
although it seems like you are giving up a lot, you will gain so much more for doing this. i quit my job and used my savings in order to take care of my mom and keep her in her home. it can be done!
I would also not assume that everyone will feel that "although it seems like you are giving up a lot, you will gain so much more by doing this." That's a very individual thing, depending a lot on the quality of the relationship between the parent and the adult child. That may be your experience, but it isn't everyone's. It isn't mine, for sure.
My husband also worries that my son is going to get his pick-up...even though he can't drive (he's partially blind from a stroke) and I have my own vehicle that I drive.
My husband is possessive with his tools...even though he can no longer use them and it is necessary for us to use them for repairs and jobs around the house...no one uses them properly...always a complaint!
He thinks someone is taking his things...even if he had the object last and he misplaced it! He thinks someone is stealing his money...even though I give him very little to carry in his pocket because he can't manage it!
He just can't understand that my son is helping me...and I don't think he can even understand that I am overloaded and need help. It is a really stressful situation for me and for my kids. I find myself trying to keep him away from the kids so I don't have to listen to his complaints.
Just things to ponder before moving in with parents that have dementia!
Moving to take care of her could be the best thing you have ever done - OR the worst. Put it on hold for a minute. Go to some Alanon meetings. Listen, really listen. From what you are describing she will quickly be at a point where she cannot be without full time close supervision, and your trailer even if it is 20 feet away will sit empty if the other siblings decide to stay away and leave it all up to you. Worse still, you will be dependent on her income, she will feel like you owe her for living in her house, and she could flat out just turn on you if she does not like the way you are trying to keep her safe. If she is her own guardian and not incompetent, she is free to do whatever she wants and not do whatever she doesn't want. If you even have her POAs in order, she could revoke them. Plus, you have left her the weapon of guilt in her hands to use against you as well. Then you are homeless and jobless, while she is no better off and maybe worse off than when you decided to "help" her. Wanting to help is a wonderful thing. Being ABLE to help - not just a little but over the long haul - is not guaranteed. Nose around on here too for the stories of what can go wrong when you move in. Sure, the people for whom it all goes swimmingly well don't post as often. Maybe do it on a trial basis at first without burning all your bridges. What makes you feel like a good, caring, dutiful daughter now could turn into your worst nightmare.
Do you even like her home, as a place you can be happy to live in?
So my last piece of advice to campyone is go out and meet real caregivers, those who are making it work. Get advice and guidance from people who are going through -- or who have been through -- a similar situation. Find a support group for care giving in your area (even if your Mom doesn't have Alzheimer's disease, go to the support groups anyway... you'll find lots of people who are caring for a spouse or a parent. You can learn from them and they will learn from you. Talk to people who work in home health and hospice programs. They can not only explain the benefits of family care giving, they can link you to awesome resources in your community. They will tell you resentment and resistance are common, and that there will be highs and lows in your relationship with your mom. But they can also provide experience-based advice on how to deal with it and other stresses that come with being a care giver. You will also learn that there is no higher calling and no greater joy than helping your mom when she needs you the most.
To quote your post:
"So my last piece of advice to campyone is go out and meet real caregivers, those who are making it work."
I guess we're all just cybercargivers, not real. Only 'real' ones can make it work. Okay, Doug. Thanks for the heaping, helping of guilt on real people who can't MAKE it work because of 24/7 care with no sleep, no finances, no community resources you seem to have an abundance of in your world and no support.
When you can't leave your elder's care for more than a half hour or not at all, do you summon the Skittles pooping unicorn to your side? Do they get up every hour with your mom and let you sleep? Must be wonderful to live in your world.
I guess that only happens for 'real' caregivers. Geesh!
I personally made a sacrificial decision many years ago that this post roused the memories and emotions behind. It was not an unredeemable disaster but it is one of my life's biggest regrets. I remember the feeling of relief, the vanishing of the guilt feelings I had for considering putting my career ahead of what hubby thought we should do at the time. When I finished med school my husband had actually asked me to just go into private practice and start making more money instead of being a resident, which even then would have been a huge mistake...my mom even thought he deserved that...so I felt guilty for saying no at the time. So after residency, I thought to myself, "yes I will make this sacrifice and hubby will have his chance to do something he really wants to, yes that's the right thing and I will do it." We moved to a city I did not like living in, to my first faculty job instead of a research fellowship that I really wanted to do, and he was going to be a history major at the university there. He dropped out after one semester. He took an airline job and was gone all the hours I was off work. I was lonely as hell. The faculty job did not pan out. Others in the department used my time and effort and my patient referrals to publish studies that would have helped me get tenure but did not bother to even include me. I learned a fair amount from the experience and moved on to what I do now, after three mostly miserable years, but came out lacking in what was needed to pursuing any kind of a research career, and that deficiency in my training has dogged me to this day. Have I ended up in the right place doing the right thing? Maybe I have. But my point is that a decision like campyone has apparently already made, if it is made out of guilt and without the foundations that you had with your family, has got all kinds of potential to bring about life-altering, non-recoverable losses.
Now if you tell me you had no income, no other caregiving help, no substance abuse issues, turf issues, or general ingratitude - but would still advise anyone else to make the same choice, and you fully recovered your own life when it was all said and done, I will eat every word and will have to do penance for the selfishness of my own decisions forever.