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I am retired, I want to travel and have an active social life. My mother does not qualify yet for financial assistance in her care, and has very little money of her own to cover non-family caregivers to give me a break.
I may of missed it, but what is your moms mental and physical shape? Do you have a senior center in your town. My grandma used to love to go there every Wednesday to have lunch $5 and then socialize with others for a while. She did this up until her body started actively dying. She lived until 95. Do you belong to a church where members or even the minister would be willing to give you a few hours break?
I don’t have any earth shattering answers for you, but I would often find myself envious of others... enjoying their lives...while I was waiting on the next emergency phone call or hearing my dad wonder around his home in the middle of the night. The only thing I can recommend is some form of respite care... in facility or in home. Everyone needs a break from caregiving. As you know, life is not always beautiful, fair, carefree... but the rough parts truly help us relate to others and be a support to others going through similar experiences. When we are exhausted and completely stressed out... this is difficult to keep in mind. I know this phase of life is so hard and unrelenting at times.
I didn't think my Mom would qualify for Medicaid, but after meeting with a social worker at an assisted living place, we found out she did! Please make sure you rule that out. We also used Care.com and found someone who would come over a few hours a week just to give us a break. It's not that expensive ( 15 dollars an hour) and worth every penny. You have to take care of you too!!
How did you vet the care person? I also want to hire from care.com but I have no idea how to make sure they are reliable and won't abuse etc....when they come, I want to leave the house and do my own thing.
You will have to ask family and friends to help give you a break.
Maybe a Church or some help organizations.
Work on a Care Calendar and see if you can get different people to volunteer one 8 hr shift once a week or every other week.
You get enough people to commit and you'll be able to go out socially and when you get enough people to commit, you could first plan a weekend trip by using 3 people a day doing an 8 hr shift.
Maybe you could find others in your position that have a live one they're caring for and take turns caring for that person along with your mom for a week then they'll do the same for you so you can take a week vacation.
My mom lived with us for 5 yrs. and 3 months until she passed away, from Alzheimer's. Because she was a wanderer, I got my exercise running after her every time she stormed out the door. I had to re-adjust my thinking, since, as you know, an active social life will be hampered by your role as a caregiver, but it's like how we've all adjusted during the pandemic. Since we couldn't take my mom out to eat during the last year or so, I cooked our all of our meals at home, the way I do now, during Covid-19. Taking care of her inspired me to write a book about our travails, (not travels, sadly, but travails) called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (My mom and dog were diagnosed with their respective health issues around the same time.)
I missed spontaneity: I couldn't just run out to run some quick errands. I had to make sure Hubby was home to watch her, (he was retired and I was semi-retired), or I took her along with me, (when her mood allowed). My social life primarily consisted of chatting with friends on the phone. I guess it was preparing me for life during Covid-19. You might want to check into your local senior center, to see if they have activities for your mom, or and/or your local Area on Aging might be able to provide some volunteers to sit with your mom for an hour or so, to give you a break. If you belong to a church or synagogue, they might be able to provide some help as well. At the beginning of things for us, my perspective was, "I 'have' to take care of my mom, " but then I changed my thinking to, "I 'get' to take care of my mom, " and that change of attitude made all the difference. Best of luck. I've been in your boat.
"I guess it was preparing me for life during Covid-19."
I hear you there, but for different reasons. Although my mother is in MC, I would get calls about this or that, which hampered just getting out to get supplies! So there were some restrictions due to that. Manageable, but still couldn't really go far or plan much as "stuff" happens randomly!
As for preparing for lock down ourselves, a combination of spending so much of my time dealing with getting mom squared away, taking over everything that she could not do, and that the facility doesn't do, almost 2 years of working on her condo to sell it (1.5 hr each way, and I can't lift anything heavy, so...), and then as all that was winding down, I got into a financial crunch so that even when some of the dust settled I couldn't move forward with all the work this place I bought needed. I've been on pretty much the virus curtailment for about 2 years!
I bristle at those people who complain they can't get their nails done or get a hair cut... Seriously? I do feel bad for those who lost jobs, don't have funds now to pay for necessities, including rent or mtg. Where are your priorities (for those people, not you)? Just when finances resolved and I could at least get started hiring someone, the virus comes along. So, my isolations continues. Only out for supplies I or mom need, deliver said supplies, manage finances, and sit, wait wait wait... Thankfully no virus in mom's facility, we're more rural, so a lot less cases floating around, but still... Now we're into the waiting game, as she had a mini-stroke, so my gears may have to shift into processing everything when she passes. Even that, we have no idea when, it could be days, months, a year or more.
Given the current pandemic situation, your travel and social life is/should be restricted. That being said, why trouble yourself until the pandemic makes it more practical for you to pursue your desires. In the mean time, I would start planning how you would handle your mother’s situation when you can actively pursue your desires.
You can’t! My Mom has been living with me almost 21 years. Life has never been the same! She can’t take care of herself. My father & siblings abandoned her! It’s what it is!
In your profile you write about your mother "She has no financial resources other than to live with me" so how exactly does she "not qualify yet" for financial assistance and Medicaid?
I think this atty is saying that mom doesn't qualify for financial aid for a NH. While there are cases of Medicaid covering AL/MC, they are less available, and sometimes not covered in some states. While Medicaid is partly a federal thing, it is regulated by each state, so there's that.
My understanding is that NHs are more for those who have specific medical needs, requiring skilled nursing, which you don't generally get in AL or MC (exclusion would be MC within a NH, but that may also require needing skilled nursing - hoping we don't ever have to go NH myself!) If she is medically healthy, but has cognitive decline, it is harder to go that route, but I think OP needs to do more research, find other EC attys, work with the Medicaid system or SW through doctor or hospital to explore this more.
The link I posted is for the state listed in OP's profile, and it does appear that she *could* qualify if she needs assistance with at least 3 ADLs.
Check out medicaid, I think they would help some. If she is eligible for medicare, try them too. But I got the impression she is not eligible yet. She will be for medicaid.
I am confused - I have Medicare - have had it for a while but lost Medicaid when my deceased husband's Social Security came to me - like I said in my post - four dollars over. I thought the MediCARE is automatic more or less but not the Medicaid - Medicare comes from the Federal Government, but Medicaid comes from the state you live in - therefore, since Texas is number fifty on the list for the quality of medical care - no Medicaid.
I'm new to this forum and don't know how to access all the additional information others are saying they got from your "profile" so I'm not sure how much time you think you have before your mom can access Medicaid assistance. What I do see in what you wrote is that she doesn't qualify "yet". That means that in whatever time frame there is, she will qualify and that will ease some of your responsibilities. You have and end date to look forward to...some never get there... Before you get there though, have you checked in with the Alzheimer's Association? I've been checking them out and they have tons of free webinars covering an enormous range of issues. Taking some time out of your day to access some of the sites such as theirs and seek helpful input. Also, have you looked into adult day care centers or senior places? There may be some free ones depending on where you live. That would get your mom some care for part of the day. And, since we're in the midst of a pandemic and traveling isn't the greatest thing right how, perhaps you could look into some of the forums for people who deem themselves stuck inside and unable to travel and get some tips and suggestions on what they've done to help them get through being unable to move about as much as they'd like. They may have some great ideas on what you can do. I saw a video of one young person who made her own video about traveling...playing her own flight attendant, check in person, etc. Be creative. Look for things you can do to not feel so burdened down. You may find new activities that fill your needs....until the time Medicaid will kick in...again, you have a date you can look forward to. Patience...little kids exhibited it with the candy challenge...adults can too, with practice.
Actually with the pandemic, maybe you can use that to your advantage. when speaking to your mom have some travel brochures and say something like. Mom I am planning this what or where do you want to go while I am away. Or how do you think we can work this so you are not alone? Not an easy conversation
Oh the joys of modern medicine and it’s unintended consequences. My mom has lived with us for six years now. I retired seven years ago and my husband just retired this Spring. No one in my family will help with her or provide a place in their home as a respite while we get away anywhere. I have hired extra help for a few hours a week to come a couple of times each week and help bath and groom her. My fear is that I will die before her or she will live to be 100 and I will not have a retired life at all. She is only 85. It is what it is but I don’t like it at all and hope that I never live to need to be dependent on anyone in my life as I WILL NOT IMPOSE this on any of my children. The two weeks she spent in rehab after a fall at home was constant phone calls from her pleading to get her home due to her morbid fear of being put into a NH. Due to a piddly amount of a pension from her job it puts her just over the limit for any assistance through Medicaid in our State. This site has brought me compassion, empathy, and much comfort but it has also caused me fear for how much worse it is yet to become.
Here is a suggestion, one I have used and it went really well. My husband was diagnosed with mild cognitive impairment, he still drove, but probably shouldn't have, could get his small breakfast, etc. But not good enough to stay by himself. I wanted to go back East from Arizona to visit my siblings in 5 states, so what to do. From information caregiver support groups, the Area on Aging in my county, I learned it was okay to use senior placement facilities like independent, assisted living type, for respite care. I looked into it, called a place I heard about, visited with the director and placed my husband in it for 22 days. He was free to come and go from the facility as he pleased, he had cooked meals, and they came to his door to take him to the dining room, he participated in some activities; they cleaned his room. They weren't allowed to administer meds because he was just a part time resident, BUT they came to his room 2x a day to see he took his meds; they made sure he showered. It worked well for me, as I got to see family I hadn't seen in years, and I was approaching 70 or even was over. I don't remember what I paid, it was around $1000, maybe more can't remember, but I just added that to my budget for my trip. Then I was able to take it off our income taxes when I filed for that year, as our medical expenses were enough to qualify (meds, transportation, non-covered procedures, eye glasses, hearing aids, , long term care insurance).etc.) Consider something like this.
Active life, probably not. Scheduled vacations or outings, maybe. Your profile says you have a sister who helps and a brother who does nothing to help. Not exactly how much care your mom needs all throughout the day. Does she just have to be watched and fed because of decline in memory? Or does she need help going to bathroom and all personal care?
Info also says you added a room for both parents to live at your residence. Did they sell their own home to build this addition? Then, the info says that after dad passed, mom moved in with you. Is it possible that siblings think you benefited from adding on to your home with parents money? If they sold a home to live with or near you, is there any of that money left to hire people when you want to take a trip?
You say she has little money, but doesn't qualify for caregivers. I am guessing that you mean caregivers to give you a week or so off? In my state, there is no respite care for 24/7 assistance in the home. Assuming she gets Medicare or Medicaid, her doctor could order some in home health care (depending on her needs ) to help her with bathing or some physical therapy, but those are quite limited in time spent with your mom. If you are ready for her to move to a facility, you can speak to her doctor and a social worker at a facility to help you with paperwork and applications to get a bed.
Depending on her needs and if siblings could manage her 24/7 care, you might schedule a family meeting with both of them to specify what you need. Maybe a week off quarterly where one of them comes to your house to stay with her. Brother still may decline, but perhaps if you gave sister specific dates she could arrange to come in and stay with her.
You might also check with some nursing facilities that could accommodate keeping her for your break. She could pay what she can pay and siblings could kick some in to cover the expense - if they would agree. Do a little research into temporary respite care at a facility so that you can present siblings with estimated cost to give you a break.
I have four cents to put in here - I do not know where some of you live, but I have tried everything possible to get help for myself - living in Texas - if you do not have money, forget help. I make 4 dollars over the limit to qualify for Medicaid - I do have Medicare and Tricare for Life (from the Military) - so I get my medical care for free. I do pay for some prescriptions and if you get help from an agency - you pay and it is not cheap. I sure can not afford it. I live in a small town and do not go to the churches here, so I was never accepted into the fold, even though I bought this house six years ago. I don't know if there are always answers for everyone that is looking for a way out - I never found one here and when I lived in different states I did not need the kind of help I need now.
I truly don't want to be judgmental towards anyone's suggestions here, but I'm horrified by some of what I've read: paragraphs full of talk about what some actually call "granny dumping" at ER depts of hospitals. It comes to mind I have heard this kind of talk at times in my life and could never wrap my head around it. Believe me I know how hard it is to be full time caregiver for a LO with dementia --I'm doing it and there are times I wish the ground would open up and swallow him. I don't know how I can manage any more. But I have taken the responsibility because he is a human being, just like me and he has no one else. I do think about what happens if something happens to me. It's not just a thought. I'm trying to find ways for that possibility. Where there's a 'will, there's a way'. It is no wonder we as Americans are losing our precious liberties, we seem to be more than willing to give them up for the govt. to take care of our problems instead of doing it ourselves. We have allowed the govt. to take literally everything from us as free people. We then turn to the govt. to take another person off our hands. The govt is not going to treat this person well. We truly have turned away from "GOD". It's very hard being a caregiver for an elderly LO with or without dementia. I will find the strength and perseverance to do what I must --and so can you.
I have been sole caregiver for 12 years with my mom. You are right when you say 'where there is a will, there is a way.' Bible reading and Bible study has helped us both through some difficult days. It is very calming and helps put things into perspective.
It is easy to fall into the trap of thinking about how all we are dealing with is affecting us. What about your LO that is dealing with declining memory and knows something is wrong? Imagine how frustrated and afraid they must feel on a day-to-day basis. I see it in my mom almost daily. Especially if her routine is disrupted. Even siblings coming to stay for a few days is rough on her because she tries so hard to make it look like there is nothing wrong. After they leave, she sleeps the next couple of days away and only wants to watch movies or do puzzle books.
Providing for a LO is not trying to be a martyr. It is about taking care of your LO. It isn't easy and it gets more difficult with each stage. Reach out for help from family, friends. Go for a drive, take your LO out for an ice cream, play games, watch children's movies. If there are things I have to take care of right now, I get mom a snack and her word search puzzle book, turn on the radio, and take care of what needs to be done. Learning to think outside the box is a challenge but well worth the effort. Get creative. What has your LO enjoyed doing in the past? Chances are they would still enjoy doing it.
When mom gets really difficult, we go outside - huge advantage of living in the country. She grouses and grumbles for a while but she settles down and really enjoys herself. This summer we even had a water fight in the flower garden. Pretty soon she was laughing and happily went about her business outside. Precious memories that I will be able to look back on and enjoy.
Find time for yourself as well. Get up earlier in the morning or move bed time ahead for your LO to buy out the time you need for yourself. Sometimes writing in a journal helps to get your thoughts in order and, once on paper, helps clear your thinking. Prayer is an excellent way to put your worries in their proper place. There are so many changes daily that it is mind boggling. Prayer allows you to let go of what you can't change and deal with what needs to be done.
Hope some of these suggestions help you as they have helped me.
I am not writing this flippantly. Within reason take care of yourself. Reach out to your parent's network of friends maybe they can help. Of course reach out to your sibs even if they are generally useless. Depending on your parent's condition get a teenage babysitter for an hour or a day. One day at an adult daycare might be a godsend, beg them to help you. I go to a private dance lesson because of Covid three days a week for an hour and a half. It's not world travel but I can lose myself in that hour and a half. Especially because I desperately want to see my wife who lives half a world away. Right or wrong, you signed up for this. Maybe the biggest thing is to try and make an attitude change within yourself until Medicare/Medicaid kicks in. I had to go from globetrotting professional to caregiver. I am a man and it isn't easy for anyone. My father told me before his dementia kicked in to steal a moment for myself anyway I could. You will be able to travel some day, just not right now. All caregivers hate their life sometimes. It's okay to feel that. I miss sex. I miss connection with others. I have been doing this for ten years. Look for ways to develop yourself. Lose or gain weight depending on your goals. Plan your trips; it's okay to fantasize. You say your mother has very little money. How about you? If you've got it, spend it, for whatever. You have a new reality. It is incumbent that you find alternatives. If you live alone and can't get out, consider using dating sites so you can have dinner with someone even if it always means having it at your place; someone out there will be open to it. If I were single and didn't have kids at home, which I do, I would definitely be looking for a partner. You don't have to do that, but you could reach out and find a website that connects you to strangers around the world; they usually would love to practice their English and you can pick their brain about their country and learn things and find different places to visit than the typical tourist traps that everyone goes to. Learn to cook their food. The possibilities are endless. I feel your pain. This to shall pass. Hang in there. If you practice a faith go deeper into it as it is its own reward. Consider gardening as there is something about putting your hands into soil, even if it's just a pot, you may find that it can be deeply calming. Seek and you will find. It will help you make it through to your emancipation. You have my empathy and my very best wishes.
Richard, yes - I agree, but you do sound just like a man. I do not mean that as an insult - not by any means - I know how miserable one can be without a partner - may it be male or female. I never say we only have one life to live - because sometimes we hope something better might come along in the future - if there will be a future.
Why did you put her condo in your name? That could be used for her nursing care expenses. Sell it and put her in assisted living. Why should the taxpayers have to foot her bill? This is Medicaid fraud.
There is not a way to enjoy your retirement when you are a sole caregiver. I too know I will tick off a lot of posters here when I state my facts. Before 2018 when I was able to get my mom into LTC and get her approved for LTC medicaid I had no life but for caregiving and work. I myself am a nurse and still work. Not retirement age yet. My mom never drove. So besides working, I did all doctors appts and believe me there were many!! Grocery shopping and all errands. So doing all this and working full time... no life!!! I’m sorry many people will think this is harsh but I’m not sorry. Mom never worked outside of the home. There were 3 kids. She always blamed everything on my father who truly was no prize. Passed away in 1997. But really make a dang life for yourself!! When I used to say that to her, she’d say I couldn’t I had you dang kids to take care of!!! Really how about when we grew up?? Also my mom was one of 5 children. All 5 lived in the same town as their parents, my grandparents. I’ll never forget the time she told me her brother, my uncle called and said my grandparents had no food in the house!! Really 5 children all each living 5 minutes away!!! I guess you reap what you sow. She is safe and well cared for in a nursing home all thanks to me and I have my life to live!!!!
Wow this really stirred up comments, my take away is that there are an awful lot of us out here in the same or very similar situation! You can't consider dumping of any kind, that is exactly how so many people end up homeless on our streets now! She is a human being and whatever occurred in the past you do not have to respond to it, just do what is right today! I just told my own sibling this, get over your anger and lets deal with the realities of today. Holding onto your anger and frustration will only harm you. You need to do more research, find a pro-bono attorney that can help you get her qualified or protect the asset in another way so that you can get her into a facility if that is your goal. Every state and every county has programs that can help, short term and long term. There is a Medicaid Waiver program in most states, the difficulty there is finding a facility that will take the Medicaid waiver, they are rapidly disappearing. There are adult daycare programs in most states. If nothing else, find a vetted person to help out a few hours a week. Many of these healthcare providers are leaving the agencies and going out on there own, which reduces the cost. I found two lovely caregivers to help me out! I found a pro-bono attorney that told me about setting up a trust for my mothers healthcare and her assets, Medicaid cannot touch the assets and similar to the Homested Act in Florida they cannot include it in her assets, so she qualifies. I am no expert but there are experts out there that can help you and guide in the right direction to get help. God Bless and good luck!
Now, I realize that I do not know the entire "situation" presented by the question - but it amazes me that people are not "putting their foot down" about having elderly parents live with them.
None of us are obligated to have our parents live with us full-time. There are other options available if people would just seek them out. We deserve to live our own lives. Nobody is going to give us the Nobel Prize for being a "martyr" in trying to care for a frail, elderly person.
(BTW, I sense that the elderly woman in question is probably using her "not driving" to manipulate her daughter to drive her everywhere. Many, many people in the world have never owned or driven a car - but they figure out how to get around via bus, taxi, Uber, senior shuttles, etc. I see lots of seniors using our city bus system and taxis where I live.)
If the elderly parent has almost no assets and only Social Security as income, then they will qualify for Medicaid. The biggest challenge will be finding a nursing home that accepts Medicaid patients.
Alternatively, you could put her in assisted living as private pay and sell off the condo to pay for it until the money runs out.
I should remind people that Medicaid has a 5-year look-back period. So, if any assets were transferred to somebody else during the previous 5 years, they will be "counted" when determining income eligibility for Medicaid.
What I can't understand is that not one person seems to consider that they were once babies and maybe their parents gave up a lot of time and money to take care of them, spent time with them and get them well when they went through all their childhood diseases. Believe me - I am not one to throw stones because I could not take care of my mother either - but I would have liked to and would never have done all this complaining would things have worked out. I was a military wife - my husband went to Viet Nam for one year and eventually came down with agent orange cancer. He fought a valiant fight - it went into remission at the five year mark and promptly returned three months later with a vengeance - guess who took care of him for the total of nine years that he was ill? Yes - I also would have liked to travel and be socially active - but there was no such thing. The entertainment consisted of going to the VA hospital every two weeks. So - I often wished I could have just left, I got angry at him - I yelled at him and went to check on him until I was worn out. When I found him dead on the bathroom floor one morning - I cried my heart out and wished I had never been ugly with him or short tempered. Remember that no one will be around forever - and no - my only surviving son does not even want me in the same state. I am not bitter - just often think we could be kinder to the ones around us - we might miss them when they are gone with all their expectations and complaining.
Obviously, you can't. This is a problem that must be addressed on a national level, and soon. 50 years ago far fewer people lived into their 70's and beyond and, in general, there were more sibs that is common today. Another truth from decades ago was that there were far more single income families.
Things have changed. The number of seniors in their 70's to 90's has ballooned. Their children (in their 50's to 70's) are much busier with jobs of their own, tighter finances, busier schedules. More and more of these aging adults are facing an impossible task of trying to attend to their own busy lives while also trying to care for their elders with little or no help. Not only do today's caregiver's have few--or no--sibs to help out, they probably also cannot count on much help from their own children. Their own children are absorbed in their own vital higher education or careers. There are also likely a smaller family. In the '60's when my grandma lived with us for a winter there were 5 of us to entertain her and keep her busy. If my own kids were to take me in there would be 1 or none.
The change that needs to take place is within the community and within our medical care system. It is unfair both to the adult children and the aging parents to ignore these problems as "family issues." They are not. They are public health issues. Medicare and medicaid must be reformed so that it is much easier for the elderly to get the care they need from trained professionals. Communities should fund both day care and residential facilities for elderly persons who can no longer care for themselves. And these facilities should be paid for by the medical insurance systems we pay into all our lives.
God knows, the decision to move an aging relative (or yourself) into a residential facility is difficult enough without all the guilt-tripping and shaming. The only issue that should be necessary to consider should be the well-being of the older person. Can they safely care for themselves? If not, what amount of care do they need? Only after this point is settled should the question come up of who should provide that care. If a relative wants to help with the care of a parent or grandparent, that is great. But it really is not healthful for either the adult child nor the parent to force the child into more responsibility than he/she feels up to.
Their children and grandchildren should be able to visit with the elderly and enjoy their parents' aging years while trained assistants deal with "babysitting" those who would wander off because their memories no longer function properly. Trained professionals should be readily available to feed and toilet those who can no longer manage these functions. Meanwhile, the ties between the generations could become even stronger as the younger generations deal with the most important issues of emotional well-being while the physical needs are cared for by physicians, nurses, and aides.
Very Utopian, I agree. Probably difficult, if not impossible, to attain any time soon. But I do think that this is the goal we need to be heading for. There is far too much damage done by the anxiety and stress pushed onto younger generations along with the national shoulder shrug of ignoring the needs of the growing elderly population. The current attitude is one in which the needs of the very old are making health and financial problems for those approaching old age. If we do not care for the dilemma of these who are pressed into caregiving now, they will simply continue to have more physical and financial issues which will force them to rely more on their own children. Kicking the can down from one generation to the next doesn't solve the problems. Ultimately, we all will benefit if we extend the protections of our health care systems to include these issues of old age.
You don’t give enough details for me to respond adequately. I look after two very elderly parents but not in my own home. They still live in an independent retirement facility but one of them is poorly both mentally and physically. It’s a tough job. I have siblings that are either unwilling or unable to help. I just tell my siblings when I am leaving for a break of two weeks. One of them steps up to take over. You need to be your own advocate. If no sibling will step up, I will leave anyway and post the siblings phone numbers in various places in my parents home. They do not know my cell phone number.
This should be a wake-up call to the 40-60 age group to invest in long term health care so their children don’t get the brunt of the caregiving for a parent. Cwasacz, I wish there was a magic solution to your dilemma but it seems your parents did not think to provide for their own care. I’m many countries it’s a given that the children and grandchildren care for the elderly. This country puts them in nursing homes and goes about their lives. Nursing homes is a huge business in this country. It might be wise for you to set an example for your own children by putting your own needs aside for a while. You will be your mothers age someday and need help too. You don’t say if you have siblings to help. If you do it’s time to sit down and talk about your mothers care. Maybe give your mother a year of your caregiving and ask her to go into an assisted living (paid for by Medicare) for a year. She may find she prefers assisted living/nursing home. Talk to your mother about it. Ask her opinion. i know what your feeling because I went through it. And I did my moms home peritoneal dialysis. It was 24/7. If you really think about it and read this web site for ideas, I know you will find a way. And I hate to sound morbid but it won’t last forever... maybe a few years. My mom passed in March and although it was hard I got thru it and am grateful I could give her those years of comfort. Good luck sabrina
I had mentioned the Alzheimer's Assn and their webinars in my earlier post, but I attended another one of their sessions today and they mentioned just what Sunnydaze mentioned--respite. They have a toll free number (1-800-272-3900) I believe, and their site should be ALZ.org I know their helpline is a 24 hour line. They've stated in webinars that you can even call them to vent--they'll listen, but, they'll also help. The webinars are free. You may want to try them out. AARP might also be beneficial to you.
In reading all these posts the majority don’t want to be demanded on. That’s usually the case. But we all get old and each new generation is being taught these values. No one is going to take care of their sick and elderly. Sad situation in life. People never think they will be a throw away soon enough but they will.
I respectfully disagree. I think the point of many of these posts is that aging parents aren’t thinking about or discussing what will happen when they are unable to care for themselves.
Instead, assumptions are being made, and you know what they say about assuming....
I don't see many posts from the elderly that could use help. Sometimes we need to see the other side. When I ask for a bit of help from my adult children I always end any request with "when you have time". Course the story is that they forgot. I realize they have jobs and their own needs. It does hurt when they don't have time for us because they are going camping on any time off work they have (for example) or that their favorite tv show is on tonight. Seems like plenty of time available to talk about Inheritance, lawyers,trust funds. You get the idea . I have two adult grandsons who mow the yard at $100 a time but again it is done when they feel like it or they need to pay their rent. Changing light bulb or small indoor jobs are good for $20 to $50 . I admit I must be doing something wrong and okay I am ready to take my beating so go ahead give it to me. Mainly I want to call it to attention that all sick and or elderly people don't necessarily carry all the fault. We don't want to be dependent on our family any more than they want it. I would love to hear more from the elderly point of view.
You don't have to be dependent on your children or grandchildren to do chores for you. Why not call a handyman service, as I do, instead of my children? At $100 a pop, you can easily hire a lawn care service to mow your lawn. And also, I'd stop talking to your family about 'inheritances' entirely. What you have in your bank account, and what, if anything, you choose to leave them, is none of their business! When my son once told me that my money was really HIS money, I corrected his ridiculous comment immediately. I told him no sir, MY money is MY money to do with as I please, which I intend to do. If I choose to leave you anything, if there's ANYTHING LEFT when I do die, then you'll be pleasantly surprised. I have a very good relationship with both of my children, by the way, in case my comments seem 'heartless'. They aren't. It's tough love and a wake up call to these entitled children who don't have time for their elders but plenty of time for discussing inheritances. Bologna.
Rebecca, I totally agree with lealonnie. Hire a handyman. I think your grandsons are taken advantage of you. I hired a young man to mow our lawn, he charges $35 for 3/4 acre of land and recently went up to $45 and gladly pay him. I hired a man to plow our driveway in the winter for $40. My brother pays for both, it is his contribution to the household. It is sad that some family members do not take the time out of their day to visit their loved ones. I hope you find a good handyman to help you soon.
Enlist (aka "hire" for cheap) people to help your mom. Lawn service, housecleaner, meal preparation or delivery... and then make arrangements with other family members, friends, members of faith community, and hired help to care for her while you go on trips or outings with your other friends. Every person needs time off from work and caregiving is work.
This is where I'm at. Thank you. This is helpful. I'm not retired, work full time, but it's just me to be on the lookout for my mother. I'm trying to do that, but also to have a life of my own. My husband passed six years ago, and my youngest is moving out in two weeks. My mother is 89, but very active. I do things with her, and help her out. I do not live with her. I'm just on here for advice when things do change. Taking it a day at a time.
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Maybe a Church or some help organizations.
Work on a Care Calendar and see if you can get different people to volunteer one 8 hr shift once a week or every other week.
You get enough people to commit and you'll be able to go out socially and when you get enough people to commit, you could first plan a weekend trip by using 3 people a day doing an 8 hr shift.
Maybe you could find others in your position that have a live one they're caring for and take turns caring for that person along with your mom for a week then they'll do the same for you so you can take a week vacation.
I missed spontaneity: I couldn't just run out to run some quick errands. I had to make sure Hubby was home to watch her, (he was retired and I was semi-retired), or I took her along with me, (when her mood allowed). My social life primarily consisted of chatting with friends on the phone. I guess it was preparing me for life during Covid-19. You might want to check into your local senior center, to see if they have activities for your mom, or and/or your local Area on Aging might be able to provide some volunteers to sit with your mom for an hour or so, to give you a break. If you belong to a church or synagogue, they might be able to provide some help as well. At the beginning of things for us, my perspective was, "I 'have' to take care of my mom, " but then I changed my thinking to, "I 'get' to take care of my mom, " and that change of attitude made all the difference. Best of luck. I've been in your boat.
I hear you there, but for different reasons. Although my mother is in MC, I would get calls about this or that, which hampered just getting out to get supplies! So there were some restrictions due to that. Manageable, but still couldn't really go far or plan much as "stuff" happens randomly!
As for preparing for lock down ourselves, a combination of spending so much of my time dealing with getting mom squared away, taking over everything that she could not do, and that the facility doesn't do, almost 2 years of working on her condo to sell it (1.5 hr each way, and I can't lift anything heavy, so...), and then as all that was winding down, I got into a financial crunch so that even when some of the dust settled I couldn't move forward with all the work this place I bought needed. I've been on pretty much the virus curtailment for about 2 years!
I bristle at those people who complain they can't get their nails done or get a hair cut... Seriously? I do feel bad for those who lost jobs, don't have funds now to pay for necessities, including rent or mtg. Where are your priorities (for those people, not you)? Just when finances resolved and I could at least get started hiring someone, the virus comes along. So, my isolations continues. Only out for supplies I or mom need, deliver said supplies, manage finances, and sit, wait wait wait... Thankfully no virus in mom's facility, we're more rural, so a lot less cases floating around, but still... Now we're into the waiting game, as she had a mini-stroke, so my gears may have to shift into processing everything when she passes. Even that, we have no idea when, it could be days, months, a year or more.
My understanding is that NHs are more for those who have specific medical needs, requiring skilled nursing, which you don't generally get in AL or MC (exclusion would be MC within a NH, but that may also require needing skilled nursing - hoping we don't ever have to go NH myself!) If she is medically healthy, but has cognitive decline, it is harder to go that route, but I think OP needs to do more research, find other EC attys, work with the Medicaid system or SW through doctor or hospital to explore this more.
The link I posted is for the state listed in OP's profile, and it does appear that she *could* qualify if she needs assistance with at least 3 ADLs.
My husband was diagnosed with mild cognitive impairment, he still drove, but probably shouldn't have, could get his small breakfast, etc. But not good enough to stay by himself. I wanted to go back East from Arizona to visit my siblings in 5 states, so what to do. From information caregiver support groups, the Area on Aging in my county, I learned it was okay to use senior placement facilities like independent, assisted living type, for respite care. I looked into it, called a place I heard about, visited with the director and placed my husband in it for 22 days. He was free to come and go from the facility as he pleased, he had cooked meals, and they came to his door to take him to the dining room, he participated in some activities; they cleaned his room. They weren't allowed to administer meds because he was just a part time resident, BUT they came to his room 2x a day to see he took his meds; they made sure he showered. It worked well for me, as I got to see family I hadn't seen in years, and I was approaching 70 or even was over. I don't remember what I paid, it was around $1000, maybe more can't remember, but I just added that to my budget for my trip. Then I was able to take it off our income taxes when I filed for that year, as our medical expenses were enough to qualify (meds, transportation, non-covered procedures, eye glasses, hearing aids, , long term care insurance).etc.) Consider something like this.
Info also says you added a room for both parents to live at your residence. Did they sell their own home to build this addition? Then, the info says that after dad passed, mom moved in with you. Is it possible that siblings think you benefited from adding on to your home with parents money? If they sold a home to live with or near you, is there any of that money left to hire people when you want to take a trip?
You say she has little money, but doesn't qualify for caregivers. I am guessing that you mean caregivers to give you a week or so off? In my state, there is no respite care for 24/7 assistance in the home. Assuming she gets Medicare or Medicaid, her doctor could order some in home health care (depending on her needs ) to help her with bathing or some physical therapy, but those are quite limited in time spent with your mom. If you are ready for her to move to a facility, you can speak to her doctor and a social worker at a facility to help you with paperwork and applications to get a bed.
Depending on her needs and if siblings could manage her 24/7 care, you might schedule a family meeting with both of them to specify what you need. Maybe a week off quarterly where one of them comes to your house to stay with her. Brother still may decline, but perhaps if you gave sister specific dates she could arrange to come in and stay with her.
You might also check with some nursing facilities that could accommodate keeping her for your break. She could pay what she can pay and siblings could kick some in to cover the expense - if they would agree. Do a little research into temporary respite care at a facility so that you can present siblings with estimated cost to give you a break.
So - maybe that was a nickels worth -
It is no wonder we as Americans are losing our precious liberties, we seem to be more than willing to give them up for the govt. to take care of our problems instead of doing it ourselves. We have allowed the govt. to take literally everything from us as free people. We then turn to the govt. to take another person off our hands. The govt is not going to treat this person well. We truly have turned away from "GOD".
It's very hard being a caregiver for an elderly LO with or without dementia. I will find the strength and perseverance to do what I must --and so can you.
It is easy to fall into the trap of thinking about how all we are dealing with is affecting us. What about your LO that is dealing with declining memory and knows something is wrong? Imagine how frustrated and afraid they must feel on a day-to-day basis. I see it in my mom almost daily. Especially if her routine is disrupted. Even siblings coming to stay for a few days is rough on her because she tries so hard to make it look like there is nothing wrong. After they leave, she sleeps the next couple of days away and only wants to watch movies or do puzzle books.
Providing for a LO is not trying to be a martyr. It is about taking care of your LO. It isn't easy and it gets more difficult with each stage. Reach out for help from family, friends. Go for a drive, take your LO out for an ice cream, play games, watch children's movies. If there are things I have to take care of right now, I get mom a snack and her word search puzzle book, turn on the radio, and take care of what needs to be done. Learning to think outside the box is a challenge but well worth the effort. Get creative. What has your LO enjoyed doing in the past? Chances are they would still enjoy doing it.
When mom gets really difficult, we go outside - huge advantage of living in the country. She grouses and grumbles for a while but she settles down and really enjoys herself. This summer we even had a water fight in the flower garden. Pretty soon she was laughing and happily went about her business outside. Precious memories that I will be able to look back on and enjoy.
Find time for yourself as well. Get up earlier in the morning or move bed time ahead for your LO to buy out the time you need for yourself. Sometimes writing in a journal helps to get your thoughts in order and, once on paper, helps clear your thinking. Prayer is an excellent way to put your worries in their proper place. There are so many changes daily that it is mind boggling. Prayer allows you to let go of what you can't change and deal with what needs to be done.
Hope some of these suggestions help you as they have helped me.
I never say we only have one life to live - because sometimes we hope something better might come along in the future - if there will be a future.
You need to do more research, find a pro-bono attorney that can help you get her qualified or protect the asset in another way so that you can get her into a facility if that is your goal. Every state and every county has programs that can help, short term and long term. There is a Medicaid Waiver program in most states, the difficulty there is finding a facility that will take the Medicaid waiver, they are rapidly disappearing. There are adult daycare programs in most states. If nothing else, find a vetted person to help out a few hours a week. Many of these healthcare providers are leaving the agencies and going out on there own, which reduces the cost. I found two lovely caregivers to help me out! I found a pro-bono attorney that told me about setting up a trust for my mothers healthcare and her assets, Medicaid cannot touch the assets and similar to the Homested Act in Florida they cannot include it in her assets, so she qualifies. I am no expert but there are experts out there that can help you and guide in the right direction to get help. God Bless and good luck!
None of us are obligated to have our parents live with us full-time. There are other options available if people would just seek them out. We deserve to live our own lives. Nobody is going to give us the Nobel Prize for being a "martyr" in trying to care for a frail, elderly person.
(BTW, I sense that the elderly woman in question is probably using her "not driving" to manipulate her daughter to drive her everywhere. Many, many people in the world have never owned or driven a car - but they figure out how to get around via bus, taxi, Uber, senior shuttles, etc. I see lots of seniors using our city bus system and taxis where I live.)
If the elderly parent has almost no assets and only Social Security as income, then they will qualify for Medicaid. The biggest challenge will be finding a nursing home that accepts Medicaid patients.
Alternatively, you could put her in assisted living as private pay and sell off the condo to pay for it until the money runs out.
I should remind people that Medicaid has a 5-year look-back period. So, if any assets were transferred to somebody else during the previous 5 years, they will be "counted" when determining income eligibility for Medicaid.
I was a military wife - my husband went to Viet Nam for one year and eventually came down with agent orange cancer. He fought a valiant fight - it went into remission at the five year mark and promptly returned three months later with a vengeance - guess who took care of him for the total of nine years that he was ill? Yes - I also would have liked to travel and be socially active - but there was no such thing. The entertainment consisted of going to the VA hospital every two weeks.
So - I often wished I could have just left, I got angry at him - I yelled at him and went to check on him until I was worn out.
When I found him dead on the bathroom floor one morning - I cried my heart out and wished I had never been ugly with him or short tempered. Remember that no one will be around forever - and no - my only surviving son does not even want me in the same state. I am not bitter - just often think we could be kinder to the ones around us - we might miss them when they are gone with all their expectations and complaining.
Things have changed. The number of seniors in their 70's to 90's has ballooned. Their children (in their 50's to 70's) are much busier with jobs of their own, tighter finances, busier schedules. More and more of these aging adults are facing an impossible task of trying to attend to their own busy lives while also trying to care for their elders with little or no help. Not only do today's caregiver's have few--or no--sibs to help out, they probably also cannot count on much help from their own children. Their own children are absorbed in their own vital higher education or careers. There are also likely a smaller family. In the '60's when my grandma lived with us for a winter there were 5 of us to entertain her and keep her busy. If my own kids were to take me in there would be 1 or none.
The change that needs to take place is within the community and within our medical care system. It is unfair both to the adult children and the aging parents to ignore these problems as "family issues." They are not. They are public health issues. Medicare and medicaid must be reformed so that it is much easier for the elderly to get the care they need from trained professionals. Communities should fund both day care and residential facilities for elderly persons who can no longer care for themselves. And these facilities should be paid for by the medical insurance systems we pay into all our lives.
God knows, the decision to move an aging relative (or yourself) into a residential facility is difficult enough without all the guilt-tripping and shaming. The only issue that should be necessary to consider should be the well-being of the older person. Can they safely care for themselves? If not, what amount of care do they need? Only after this point is settled should the question come up of who should provide that care. If a relative wants to help with the care of a parent or grandparent, that is great. But it really is not healthful for either the adult child nor the parent to force the child into more responsibility than he/she feels up to.
Their children and grandchildren should be able to visit with the elderly and enjoy their parents' aging years while trained assistants deal with "babysitting" those who would wander off because their memories no longer function properly. Trained professionals should be readily available to feed and toilet those who can no longer manage these functions. Meanwhile, the ties between the generations could become even stronger as the younger generations deal with the most important issues of emotional well-being while the physical needs are cared for by physicians, nurses, and aides.
Very Utopian, I agree. Probably difficult, if not impossible, to attain any time soon. But I do think that this is the goal we need to be heading for. There is far too much damage done by the anxiety and stress pushed onto younger generations along with the national shoulder shrug of ignoring the needs of the growing elderly population. The current attitude is one in which the needs of the very old are making health and financial problems for those approaching old age. If we do not care for the dilemma of these who are pressed into caregiving now, they will simply continue to have more physical and financial issues which will force them to rely more on their own children. Kicking the can down from one generation to the next doesn't solve the problems. Ultimately, we all will benefit if we extend the protections of our health care systems to include these issues of old age.
I just tell my siblings when I am leaving for a break of two weeks. One of them steps up to take over. You need to be your own advocate.
If no sibling will step up, I will leave anyway and post the siblings phone numbers in various places in my parents home. They do not know my cell phone number.
i know what your feeling because I went through it. And I did my moms home peritoneal dialysis. It was 24/7. If you really think about it and read this web site for ideas, I know you will find a way. And I hate to sound morbid but it won’t last forever... maybe a few years. My mom passed in March and although it was hard I got thru it and am grateful I could give her those years of comfort. Good luck
sabrina
Instead, assumptions are
being made, and you know what they say about assuming....
I totally agree with lealonnie. Hire a handyman. I think your grandsons are taken advantage of you. I hired a young man to mow our lawn, he charges $35 for 3/4 acre of land and recently went up to $45 and gladly pay him. I hired a man to plow our driveway in the winter for $40. My brother pays for both, it is his contribution to the household. It is sad that some family members do not take the time out of their day to visit their loved ones. I hope you find a good handyman to help you soon.