We often hear about “having the talk” with our parents and when we do, it usually has to do with our parents needing help and finding a way to help them without overstepping their boundaries.
But I believe there is another “big talk” that happens after a parent moves into your home or you move into their home to help them. I think this one may be even MORE difficult………at least, it was for me. This talk has to do with establishing OUR boundaries.
When my father came to live with me, he moved 1300 miles away from his former home (which I had also done just 3 months previously) so of course, he didn’t know anyone. It was understandable that I would take him to church with me, to lunches, on drives to explore the area and to run small errands. I didn’t realize though that he wanted to go EVERYWHERE with me. I quickly learned that he became insulted if I didn’t bring home along to the grocery store with me or even to go shopping for linens! It became almost (no, completely) impossible to go to dinner with my friends because he would then be left behind and would pout.
When he first came to live with me, his dementia had not progressed so far as to make him unsafe at home alone for an extended period of time but still at that time, he was not walking well with his cane and refused to use a walker. He fell a LOT. He was also beginning to have some incontinence problems which made having a bathroom available VERY important.
Because of these conditions, just taking him along to the grocery store was not simply a slight inconvenience. It could take up to 2 hours to get out of the store because of how slow he walked and because it usually became necessary to hunt for a restroom at some point during the trip. I recall this experience when my children were potty training. BUT……..I couldn’t go into the restroom with him to help him, so I would stand outside hoping he was okay. I cannot tell you how frustrating these trips became (although, you may already know from your own experiences).
I remember a time when I had taken him with me to Costco (because he wanted some WWII DVDs that he heard were available there) and almost collapsing into a tearful heap in the middle of the store. There were only 2 motorized chairs available at Costco and both were in use. This meant that we had to use the wheelchair – with me pushing it, because of the neuropathy in his hands. Trying to push a wheelchair and a Costco cart at the same time is almost impossible and as more items were added, it became worse and worse. I finally just couldn’t do it and left without many items that I needed.
That’s when we had to have THE TALK. I told him that there were things that I needed to do and that I just couldn’t afford to take that much time to do them. He said that he understood but emotionally, he didn’t. The dementia only added to his anxiety and loneliness.
My wanting to go out alone was an insult to his independence, so I signed him up for the “senior companion program”, a program which is available in many areas that matches up a home-bound senior with a companion volunteer. My father wasn’t so happy about this either but it did give him diversion enough to where I could run out and quickly do errands.
Eventually, it was necessary to have a caregiver with my Dad whenever I left the house (once a week for 4 hours). He not-so-affectionately called her “the babysitter”.
There was an experience, when my grown children were visiting from California, that I’ll always regret. We planned to go down-town for the parade that night (all of us) but before that, the kids wanted to visit Cabella’s, a huge hunting/fishing/guy kinda store. We left my Dad with “the babysitter” and had planned to return to pick him up before the parade. But the weather turned bad – there was sleet, fog and snow and I knew there was no way to keep him from falling (because he still refused to use the walker) so we didn’t go back to get him. He was VERY VERY upset when we returned. In his mind, he was perfectly capable of navigating that event in bad weather conditions and he was very hurt that we had not included him.
My mistake with my father was in not having THIS talk soon enough. When he came to live with me, I wasn’t aware of how frail his condition had become. He didn’t come to live with me because he thought he needed help; he came to escape a bad situation where he had been previously living. Perhaps many of the hurt feelings and frustrations could have been eliminated if we had set boundaries from the very beginning.
Before your parent ever comes to live with you or before you move into their home, have a talk about boundaries. Convey to them that you are also a grown-up and need to have some time alone to spend with your friends and family and that you intend to do that. Tell them that if the errands can be done quickly, then there will be more time for playing board games or taking long drives in the country.
Don’t be like me who, now that my caregiving has come to an end, has essentially no social network and must begin again to make new friends.
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I think most of us have had “that talk” with our dependent parent. I think most of us have this talk every day, perhaps every hour. Common sense has long since flown, and we now are their entire lifeline for every aspect of their remaining days.
Perhaps remembering how they were caregivers for THEIR parents and inlaws. Comparison? Oh, they didn’t care for their parents at all? Well, GEE. Or remembering how when they were parents and we were young pouting brats. Did they stop what was “wanted and needed” cause we were throwing a fit? No way. However, all these rationales are in the common sense column, and our dependent parent is now just an emotional trigger waiting to be disappointed and let down.
Bribes and treats sometimes works with Mom. Bring her back a MacDonald kids meal toy. A piece of chocolate. A 3D greeting card. (She’s easy.)
Giving your parent a chore to do (work) while you go out (work). Perhaps prerecording football/basketball games and play it back when you go out. Some Andre Rieu concerts are two hours long on DVD. Hire a male caregiver to go WITH you to attend to your father while you do Costco. Let them sit in the cafe, or leave them off at a sports bar to watch the games. They are both out having an adventure, without you. Pay friend to pick up things for you while THEY shop at Costco. Shop more online, even for Depends. Have Safeway deliver.
The solution will be different for each person. My Mom cannot be left alone at all, and there’s always a danger just going into the kitchen that this will be the moment she decides to . . .
I think that not all parents who are receiving care by their children are quite as critical as your Mom or as my Dad became in the last year and a half of his life. Some aging parents or loved-ones just need a little extra support or they get to the point where they can’t afford the expenses of living on their own.
For THOSE loved-ones, it’s important to talk about boundaries.
I remember when my father first moved in with me and he was talking on the phone to a friend. He said “yeah, I’m now retired and living the good life. My daughter is taking care of everything.” Even though I remember wincing at the time, I didn’t how true that would become.
Wow…this is my life. My mother has lived with me for the past 9 1/2 years but was reasonably independent and mentally sharp, and even worked part time, until about 2 1/2 years ago. She’s 91 now and driving me crazy. I love her but her current dependence on me, not to mention her constant making of messes around the house (translate…more WORK for me), are just about to do me in. 2 1/2 years ago, when she began having health issues, she just gave up. Said she could no longer manage her finances, could no longer do any light cleaning around the house, could no longer do her laundry. So for the last 2 1/2 years I have worked my full time job, along with my part time job, done all the cleaning, laundry, cooking, finances for two people, taken her to numerous doctors, helped her through 4 hospitalizations, kept all the medications straight every day, yada, yada, yada. Now mind you I have two older sisters and two older brothers. None can come to help (translation…none WANT to come to help). As my oldest brother told me “you are the one who is there with Mom so this is your responsibility”. I am drowning. I feel like a machine that drags itself out of bed each day, does the same thing over and over, and collapses in to a heap each night. I’m so tired and stressed I rarely wake up feeling rested or refreshed. I feel like I don’t even exist anymore as a person. I hate what this has done to my relationship with my Mother. We used to be great friends, now I can hardly stand to be around her at times and scold and snap at her when she has me at wits end, but I’m trapped as someone has to care for her. And once she does pass on I will be left with nothing. Its all so sad, so depressing. If you are not rich in this country, and able to afford in home care/assistance, you are just SOL.
@Kathleen
I can relate to all you are going through. My Mother is 92, and I am her sole caregiver, other than a worker who comes in for an hour every morning to at least make sure she is bathed, and cleaned. There are moments when I wish I could just walk out the door, and not come back. There are times when I lay awake at 3am trying to figure out what I did wrong, or why I feel like wanting to just leave home, at 55 years of age. My other half, can’t handle it, can’t discuss it, so it becomes a test of endurance, that seems like it will never end. There is no easy answer, no saving grace other than, it is what is right, what we must do, as loving siblings. It isn’t right that other’s won’t pitch in, but that is their Karma, ours is to do what we do, despite the anger, the worry, the seeming endless drudgery. Yet, too, it isn’t all bleak, all bad. There are moments when it just feels like you can’t go on, and suddenly you remember how she stood up for you when a bully threatened you, or how she made your special dinner, because you got a good mark at school. It isn’t easy but remembering, talking about in your own spaces, is maybe all we can hope for. Doesn’t seem like much, but then, does it have to be? There is no easy answer, other than having to dig deep, to rely on our own sense of right, to keep us on keel, to make us push on through the anger, the despair, the pain. We won’t always succeed, I fail more times than I would like to admit, but we are just human, and do the best we can do. Not much of a help, but you are doing what has to be done, not because you are there, but simply because you care.
Good luck and keep the chin up, it’s sometimes all we can do.
Ian
Hi Ian and Kathleen,
The issue of Boundries as put forth by Shelly is key and best done at the beginning and each time a new boundry need arises. Now it doesn’t mean your parent will follow the boundries – mine sure didn’t and it seems yours don’t either. Like you, my sister ‘tried’ to help but it was a joke mostly. And for the love of my parents, like you, I took all kinds of abuse, had no life of my own and many times came to resent my parents because I ceased to be a daughter but rather became the Caregiver.
I hired a housekeeper to help me keep the house clean and it took a lot of weight off of me and during the time the housekeeper was working, several hours, my father was quite content and didn’t want me around – he got to interact with the housekeeper, tell her what to do and just watch (supervise). Me – I got to go do errands or do someting at home I couldn’t do while caregiving. I seriously had little money but between what I could come up with and a little of Dad’s, the housekeeping help made a huge difference for both of us.
Really learn your State’s system on getting PCA help. When it was both parents, we paid out of pocket. Just Dad, got some help paid by the State. Both times, it make life easier for me and better for them.
If siblings won’t help with their time, then they can contribute with money to help get some assistance for you and/or the parent. Fair is fair.
Know when you’ve reached your limit and decide what to do. I called a family meeting and said I couldn’t continue as is and that another home option was needed. I had written my thoughts down and each had had the paper for a few days to think. No one wanted any changes but me. I had to stick to my guns for me and my family against my parent, his girlfriend and sibling.
My father moved and actually adjusted well but he never totally forgave me. I got to be a daughter again and it was nice to be that when he died. I recovered and my family, though I still spent a great deal of time every week on Dad’s issues/visits/needs but the load was managable.
Remember you have rights too and that you have to care for yourself, because no one else is going to. You’ll know when the time comes and hopefully will have the strength to do what is best for you, regardless of others.
Tonia Boterf
The Practical Expert
617-895-0249