18 months ago when we knew my mom had *something* wrong but before the Alz diagnosis, I joined Weight Watchers. Even while things have gotten worse, I have managed to lose 70 pounds.
Then this summer things got worse. I was working lots of hours, mom took a turn for the worse, had house guests, etc. We used to be able to leave mom alone while we went out. So I would come home from work and be able to take a walk. That ended. She now needs someone with her all day or she gets upset. I found out that I can't even walk on the treadmill, which is in the bedroom next to hers. The treadmill is so loud that I can't hear what she says to me from the doorway, and she won't come closer. So now she sees me on it and gets upset.
For the last 5 months, I've been bouncing up and down with the same 8 pounds or so. I finally decided that had to stop. I've gotten back on track with my eating and plan time for my brother to be with mom while I exercise. It doesn't always work out, but so far so good.
As caregivers, we HAVE to take care of ourselves or we'll get sick, stressed, depressed, etc. (YOU all know.)
So what do you do? How do you try to balance being healthy with the time/energy, etc needed to be a caregiver?
To write to an individual on the forums, just click on their screen name, like your screen name is Marymember.... then you will see POST A MESSAGE, that message will only go to that person.
Marymember, you started out with a whole lot on your plate! If you cannot start another thread or question because of difficulties, just keep posting here.
OR, maybe you want someone to start a question for you so you can get the focus you need on your issues?
Fast forward more than a year since my previous post, my Dad now has 24-hour caregivers and my Mom is in long-term care. Even with that I still find myself exhausted.... I find myself visiting Mom daily, with or without Dad along [trying to train Dad to ask the Caregivers to drive him], checking Mom's needs, doing her laundry... and couple weeks ago came home with a huge arm load of my parents financial information from their home of which I found out wasn't being tended too, now I need to sort through a ton of loose papers, pas-due bills, medical reports, etc.... [sigh].
If you want to start a thread, or ask other caregivers a question, look over to the YOUR ACCOUNT box on the right, click on the grey line that says MORE, then scroll down to ASK OTHER CAREGIVERS A QUESTION. Post a short question, then add to it below.
OK, just now I am noticing just above, as I am answering your question: where it says in bold: Answer this Question. Then it says: Please stay on topic or 'ask a new question.
The 'ask a new question' is a hotlink in blue, click on it! Thanks to Gladimhere for teaching me about the blue hotlink. We can all help each other, good luck marymember.
Thank you for information. I am not sure how to start my own question/thread..I have been a member for awhile, and have had feedback....I am very jumpy..often I react with a scream when my husband all of a sudden is standing by me, or behind me, and I don't hear him approaching...My daughter had to have his pickup key disabled as he shouldn't be driving. He insists someone siphered the gas out and broke the window of the pickup, when in reality he broke the window of the pickup. He works outside every day, as he is a work-aholic. He mowed over seven watering faucets for the peach orchard and we had a heck of a time finding the cutoff. He has been pulling out thistles and emptying an old storage room. Everything is spread out on the ground..junk, old tools, hoses, tractor parts, etc. But he works, works, works, and doesn't spend all day sleeping in the house. He calls me his girl. I don't think he remembers we are married. I have been to a memory care home where I wil eventually place him, but that should be awhile. He has other health problems. and hates to take medicine. Anyhow, I am so fortunate to have a daughter and a son nearby. We all went to an eldercare lawyer last week and we are getting a lot of paperwork done as we will need things put in order. But I am so jumpy and it is hard to do and get everything filed and organized. I also have POA of my99year old aunt and a friend who is in assisted living. (she, my friend, has been falling a lot as she is almost blind and her balance is so poor.) It is not fun having my days filled with doctor appointments and visits and obligations. I also have a lot of friends who are homebound want me to visit them. thanks for your concern. I appreciate it. marymember
You can start your own question/thread if you are needing more ideas, then the focus can be on you and your own needs. How can we support and help you more?
Yes, Caregiving in the 2010's is so different from the 1950's. My parents come from the old school where men went out to work and the women stayed home and cared for the house/children. I wasn't blessed with children so I continued my career because staying home, cleaning, cooking, and having the whitest white sheets on the clothes line just wasn't my thing any more.
Many times my Dad would say it is time for me to quit or retire from work to help them. I finally was able to stop Dad from asking me that question by asking him "Dad, did you quit work to help your parents or Mom's parents?".... I knew the answer would be "no". Then he understood.
My parents tend to forget that I, too, have a large house to care for, and I have my own yard work.... I pay others to help me, but my parents refuse to open their wallet to pay others to help themselves which they can easily afford. I really think at times my parents think I am still in my teens with no home or work responsibilities. I found even talking to them about my own Social Security and Medicare issues, and flashing my AARP card, it doesn't sink in..... [sigh].... but I guess that is normal.
Finding AgingCare.com has been a great help.... getting good tips on what to do in certain situations, and learning about different aspects of elder care I never knew existed as my parents never took care of their own parents, nor did I know anyone who cared for their own parents. It was like I was thrown into the deep end of the pool and didn't know how to swim.
Like my parents probably think I am half my age, I never envisioned my parents becoming elderly.
The only way is to learn to detach from your parents' issues to some degree and that is very difficult. However, sometimes it's your life or theirs.
I've spoiled my loved ones, too. It's hard to undo some of that. But insisting that they take a cab or get someone else to drive them is sometimes the only way we can get a break. They hate it. But if we don't do it we don't have a chance of relief.
People with some faith base can sometimes learn to "turn it over" - feel less alone if they feel they have a spiritual connection. I'm not saying that this is magic, but when I've been at my wits end (not rare), I've had remind myself that I believe that there is a presence who can carry the load with me. Mediating on that helps me cope.
Your last sentence is about an issue that is becoming much more common. Senior citizens taking care of senior citizens. People with their own health issues (not necessarily senior citizens) becoming frazzled caregivers of the older generation.
That is the price we pay for people living longer lives. People live longer but not always healthy enough to care for themselves. Therefore, people are becoming caregivers at an older age and staying caregivers for much longer than in the past.
When I hear "but it used to be that families took care of the elderly at home" I want to remind people that it used to be that the average woman was at home while the man worked at the job. The average parent didn't live so long that the adult "child" was a senior citizen. Things have changed, so harking back to the 50s just doesn't work anymore.
I'm not giving you any relief here except to say that I - and many people on this forum - understand your frustration. What is the answer? Get tougher, I guess. Stand up to our loved ones and look for outside help to some degree even if whine, cry and complain because they just want us.
Take care of yourself somehow. Connecting with others does help so please keep letting us know how you feel.
Carol
My Caregiving role is quite easy compared to what I read what others have to do for their parents/spouse. Currently all I do is be my parents driver as they stopped driving 5 years ago, they are now in their mid-90's. Go here, there, everywhere. I also get their groceries. One major problem, couple years ago I started having panic attacks when driving. I mentioned that to my parents thinking that might be a wake up call, but all they said was "but who would drive us?".... [banging head on wall].
Because I have been busy driving my parents to their many various doctor appointments, I don't have the energy to make appointments for myself.... I know I should, especially since I had breast cancer 4 years ago. It was stress related as there were no other markers. I have almost run out of vacation days and sick days at work, which were used driving my parents.... [sigh].
Anytime I mention to my parents how tired I am, that I have age related decline issues myself, and that I can't drive here or there as much as I use to... and that they might outlive me.... they look at me like my hair was on fire.
Did I spoil my parents, probably so. If only they would move to a retirement community where they could enjoy the rest of their lives and where the community offers free transportation. Then maybe I could enjoy the rest of my life, too. But they refuse to move. Maybe I will move there, as my house has gotten too big for me to handle.
Senior citizens taking care of senior citizens, who ever thought that would be the norm.
You take very good care of your husband. As a matter of fact, I'd guess that your renewed self is perceived as a happier self by your husband, which helps him, too.
I loved your words: "This is NOT me, this has never been me. Where has the pride, the self-assurance gone! If no one else cares, I must care."
No one but another caregiver - nearly all of us on this site - can really understand. But we do. You have it figured out. Thank you for sharing this positive message.
Carol
It is a blessing that you have a sib that will pitch in to help. Mine checked out long ago.
Sometimes I wonder how I am going to get through this period of my life (lots of other stuff happening outside of my caregiving duties). What has helped me is prayer (if you are a believer) or at least positive thinking. I joined a prayer site online...somehow putting my thoughts into words really helps. Also, when I am feeling bummed, I make a mental list of all the things that are going well in my life. This forum is on my list...the people here are awesome and so generous about sharing their experiences.
I try to do at least one creative thing that I enjoy everyday...doesn't have to be too involved. I work fulltime, but my work is somewhat creative and flexible, so that helps. My hub also pitches in - an amazingly patient guy!!
Good luck with your weight loss program...I hope losing weight gives you the motivation to continue...
Lilli
My brother lives with me too and he doesn't work. He has some health issues, but is there all afternoon with mom. Sometimes I feel ba coming home from work and then working out - like it isn't fair to him. But I'm doing it anyway. It's harder on the weekends. I take care of mom until 2 or so in the afternoon. Then my brother takes over so I can run errands, groceries, etc. I can't work out when it's just me, and after that I'm usually out of the house for at least a little while.
The other thing that's tough is cooking more than one meal. Mom won't eat many vegetables any more, and I eat a lot of them. But I'm getting better at it.
I am definitely not putting the weight loss on hold. How long do I wait to get healthy - 5 years, 10? I've lost 70 pounds and have about 50 more to go. In addition, I have other goals that required me to be healthier than I am right now. I'm just not going to give up on having my own life. Mom is very young (63), so this could be my situation for a long time.
Thank you
That Alzheimer's Helpline sounds like a real winner. Hapfra is on to something. That will give you resources about your mother's disease.
Next, you need to inventory your resources. I was amazed at how many semi-skilled caregivers lived within a block of my home when my mother-in-law started needing round-the-clock care including the hours I spent at work. You might be able to do it all yourself; then again, doing it all yourself might just plain kill you, and then where will your mother be? Any help from social services agencies?
Next, prioritize your activities. Depending on whether you are 20 pounds overweight or 120 pounds, you might want to rethink controlling your body weight until your caregiving situation gets resolved. You might not have time/energy for both.
I had to separate the hurtful things my mother-in-law said when she was drunk from those she said when she was sober, because one was just a part of the disease and the other might, I repeat might, be valid. When the dementia reaches out and hurts you, please see that it wasn't your mother that did it. Your mother raised you with a million kind acts over a lifetime, each of which came from the highest part of who she was. The disease acts hurtfully, and you need to separate that from things your mother does.
You have a tough row to hoe. It's hard, and you aren't imagining it. It will take all the strength, toughness and compassion you can muster to get through it. Ask for help. You deserve it.
Warmly
JonathaninOregon
I just want you to know that you are in my prayers and thoughts. I love this website as it helps to raise awareness that we are not alone. Some have it easier than others and I know my burden is much lighter than yours. My dad goes to bed by 9:30 and I get him up at 7:30. That gives us an hour alone before lights out. My husband is a great help but he is feeling the stress after almost 3 years.
When dad says, with tears in his eyes, that he knows how much we are giving up to care for him it definitely makes the job easier. Your poor mom just can't pull that out in her condition. So sad since she took care of her own mom.
Take care and remember to breathe!! Marion Buss
Hap - unfortunately, we tried day care with Mom and it didn't work. Her anxiety level was too high and she was upsetting the other people there with constant crying, pacing, etc. And there is no other family. Both Mom and brother moved in with me a couple of years ago. No one else is near by.
Sometimes the hardest part is motivation. I may have the time to work out when I get home, but an tired from being at work and from knowing what I still have to do after wards (cook dinner, pack lunch for work the next day, etc.). It is often much easier to flop on the sofa and watch Jeopardy and Wheel of Fortune with the family (we do that every night).
Best~
Hap
Julie, I have 1-2 hours I can use inbetween work and picking up Mom at daycare. One is usually groceries, or dr or dentist or errands, I never get time. The ONLY thing I do do is I park at the furthest part of the parking lots whereever I do go and get in a good brisk walk. I also lost a lot by eating less but when I get stressed, I grab the food with no care. I do my best but I know my Mom wont be here forever so I do what I can and thats all I can do. A woman at the daycare has medicaid and she gets many hours free, she works out nightly, we dont get medicaid unfortunately.
It is easy to "plateau" with your weight gain when you are not doing your cardio exercises, and most of the time you feel like you don't have the energy to do them and keep your heart rate up for 20-30 minutes. My advice is to do your cardio exercises BEFORE you start the day with your loved one, that way you are getting a headstart on the day and it will give you extra energy to accomplish the tasks layed out before you. You can get in a 2 mile walk in a half hour, on the 3.5 setting on the treadmill. If you can't do the half hour, then it needs to be at least 20 minutes. A little secret of mine, I take a tablespoon of metamucil dissolved in hot water EVERY night usually an hour or two before I go to bed. It keeps things "moving" and the sludge build up is non existant. Which we ALL know can make you feel sluggish and stip you of your much needed energy. Metamucil not only keeps you "lighter", it lowers cholesterol.
The problem with the noise from the treadmill can be somewhat filtered with the sound of a fan motor running or even get a piece of carpet and nail it up on the wall in her bedroom that faces that room.
I hope it works out for you. God Bless.
Carol