Anyone out there taking care of an elderly parent? My mom lives an hour away from me. I spend 4-5 days a week staying at her home taking care of her, the house, the yard, etc. She is 87 and in poor health. She seems to have the beginnings of dementia and her legs are swollen from edema. Her diet is horrible. Well, she will eat what I make, but only drinks coffee.
My sister comes when she can, but she lives 2 and 1/2 hours away and works, too. I was the one that was always here, then when my dad passed away 7 years ago I started staying with her every other week for 3 days or so. I was here to shop, eat out, and talk.
She started with slight incontinence about 4 years ago and hasn't been out since. She will not see a doctor. She hasn't since I was a teen and I am now 58. She can barely stand and walking is getting harder and harder for her. She'll use a cane, but not the walker I got her. I can't remember the last time she showered. I got a shower chair, but still no shower. She barely even washes up anymore. I am at my wits end.
She spends most of the day and night in a chair. Getting her into bed, to get her off her buttocks, is a constant struggle. She falls asleep and tips out of the chair. She sometimes falls when walking. God is on her side because she hasn't broken anything yet.
If anyone has had similar experiences, please write. I feel so alone. My poor husband is getting upset. He just can't understand why I can't just tell her she has to move in with us. She will not accept outside help. If I could get her to accept an aide once in awhile, it would help so much. Please contact me through Thriftyfun. You can click on my name and an email message window will open.
I have found a few message boards, but everyone there seems to think they are doctors with the advice they give. Or just plain mean. She's my mother, I still must treat her like my mother and not some child off the street. I love her, but I am so stressed out. I have my own health problems, too. Please help if you can. Regards.
By valery from Cranford, NJ
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Check and see if there is a Senior Center in your area. If so, take him and leave him there while you do something for yourself. Barring that, see if you can get somebody to relieve you every now and then - maybe, a church member or a neighbor.
Here in Canada, our health care system has "home care workers" who come to your home to help you. They bathe the patient, tidy their living space, prepare meals, and provide respite services, so the main care giver can go out for a while. Check with your doctor to see if you have this service available in your area. It's free here.
I wish I could help but I have no words of encouragement or suggestions other than keep trying.
She probably hasn't tried to take a shower because she can't. Have you tried to talk her into letting you help her get cleaned up? If not in the shower how about a sponge bath?
Does she have any elderly friends who are now alone as well? Maybe one would be interested in moving in with her. Cut down on the persons expenses in exchange for helping her daily.
Sorry, can't think of anything else that might help. The only other thing I can think of is if she won't move in with you... move in with her. Sell your house and you and your husband live in hers.
I did a search on the US Government website and found this link. It is specifically designed for long-distance caregivers: www.cfad.org/
Let me start by saying that I am so sorry for your situation. It is so heartbreaking when our parents and other relatives are struggling in their later years. I definitely do not want to sound harsh or rude in anything I write (the written word doesn't translate like face to face discussions and hugs).
I have dealt with an older parent (father who passed away this past Feb.) and am now dealing with an elderly aunt (she has no children). I am 56 years old; I can tell you that being in the generation where you have to be the adult instead of the child and make decisions for someone else really stinks. My brother and I have been able to work together to try to do our best for our loved ones. Trying to find the balance for them to help make their decisions, maintain their dignity, and feel loved was sometimes a delicate balancing act (especially as the dementia progressed). Your tasks probably seem very overwhelming at times and you feel torn in many directions. I have wished many times for a handbook telling me what to do during these many years of caring about and for these loved ones.
May I suggest a pros and cons list (paper and pencil) where you, your mother, and your sister sit down together and discuss goals. This will not be an easy conversation; just keep in mind and discuss up front that you all want the best for your mom. Example for goals (so everyone can see the big picture): for mom to stay in her home by herself vs bringing in help so she can stay at home vs moving to your house with additional help vs nursing home care. I know nursing home may sound harsh (not meant that way) just that she isn't able to stay by herself and if she isn't willing to accept outside help her condition will decline (it is not meant as a threat). Another one would be to see the MD to see if she can become more mobile so she will be able to remain in a home environment (hers or yours). Also put on the list to maintain her independence and dignity as a reassurance to her.
Unfortunately, there are many hard subjects and concerns to address during this time. I've been there and my heart breaks for you. Please let me know how things go for you; I will keep you and your family in my prayers. Feel free to contact me if you think I can provide you with any ideas that worked for us.
Lived with Mom and Dad caring for my Mom for 2 years, when she finally died of breast cancer 5 years ago at the age of 58. It was really the brittle diabetes that killed her; made her too weak to get the care she needed for the cancer. It was the massive stroke that made it necessary for me to help out and move in. For me it was easy to do and I do not envy you the task you have at hand.
The shoes you have chosen to wear, suck! But please do not give up.
So here is my advice, which stems mostly from "after thought" of my experience; things I wish I would have realized then.
People whom have written themselves off don't take showers because there is no reason to feel good. Each day bleeds into the next and why smell good if no one is coming over and you know you're not leaving the house?
Got a reason to throw a small party? or have some gals over to play cards, or a movie night? Not long drawn out visits but someone over for an hour or more every other day. It might make her realize what she is missing. But be forewarned, she may throw a hissy fit to prove a point or embarrass you to get you to stop, so please prepare the guest for it before hand.
Some old advice....
The people we hurt the most are the ones we love. You don't have to fight it out alone. Help is everywhere these days. And remember, Doctors and other types of physicians will still make house calls if you find the right ones and just ask. It sounds as if your Mother has some serious health issues going on. She may not even be aware of it. I work with people that have disabilities, and Bi-Polar, and Manic Depression disorders are so unpredictable, and sometimes the changes in those with the disorder are huge. Maybe she has something that age is making worse. Either way, I hope you can get her to see a Doctor soon. And really chick, if nothing else, take a list of "symptoms and changes" you notice to the doctor and see what they think?
And then there is, communication is the key.
I have to wonder if your Mother has heard these words you have written above? If you have told her exactly how this all makes you feel? Not the letters that make your words, but the tears of fear and frustration behind them.
It can be so very hard to open up to someone that is supposed to be the wiser, learned, peer and parent. I cried tears that swelled my eyes for three days, when I finally said the things that needed to be said to my Mom. But I made sure she heard me.
All I can say is be sure she hears you when you are ready to break it out and tell her there has to be compromises.
Say it three different ways, with good eye contact, and give her two choices to make. Something she can still control. But make sure you don't give her seven different ways to ignore you.
Let her know there will be compromises made on both ends, and let her know that you are making sacrifices you never thought she would force you to make out of love. She may even have it in her head that she is protecting you by keeping you shut out.
My point is that she will never know just how this situation is effecting you, unless you tell her. I am talking about your marriage, your relationship with your sister, work, health, and most of all your heart and spirit. These are things SHE helped you build in hopes of a fruitful life through guidance and parenting through the years and I can't think that she means to deny you them now, but she is scared, and she is human, and her health is failing. Who wouldn't be a frickin' mess?
Sent you private information.
I googled and found this.
www.state.nj.us/
Found help for you to contact and talk with at your city, state. They can help you. You are killing yourself without help. Do not do the guilt trip on yourself. She is still your mother and your her daughter but you are not a child. When self-injury due to falls, illness due to lack of medical care, nutrition an issue cause she won't eat, it is not a reflection on you. It is her choice at this time to use things she can for control.
You need to be the caregiver and the parent. The phrase is parenting your parents. Many places out there to help you. You are not alone. Here in rural MN we have such good care for situations like this. Still stay in their homes, care, meals on wheels, daily check ins.
As a person who delivers MOW, we make note of things and report back to the hospital (who cooks the food) when we think things need checking on. Always carry a cell phone, sometimes you neeed to call an ambulance when you find them sick or fallen.
As I stated in my email to you, I have lived this recently with m-i-l and in the process with own parents. You have to have conversation whether they like it or not. They will forgive you if they get mad. Take a stand on her health AND YOURS. Tell her you have to make the cnanges so you don't die young from the stress. Your FMS/CFS and all the addtional issues that come with both can kill you.
I don't have your experiences. But a friend of my did. I can only offer ecouragement. You are a wonderful daughter, I know there is a special place in heaven for women like you. God Bless.
I am so very sorry. I ache for you.
My dad lives three states away from me and he has Alzheimer. His wife, my stepmother, is 80 and trying to take care of him by herself. The frustration and worry can eat you alive.
I very much admire your loyalty and dedication to your mom. You are an amazing daughter! You need to get more help though. This has gotten to be much bigger than anything you can handle. If your husband is willing, I would move your mom in with you. She will be very upset, but she cannot be left alone anymore. She has shown that she is not thinking clearly, so she has kinda lost the right to make decisions. Sorry.
Try to think of it like caring for a toddler. They throw fits and don't make good decisions. You have to be firm and do the right thing for them.
You are wearing yourself out and you need to take care of yourself, and your husband, and your mom. That's why everyone should live in the same house. May God bless you with his comfort and strength!
You can sign her up for Meals on Wheels when she's at your house too. That will lighten your burden some and give you a great support service. Call them and all the other places mentioned! Everyone's advice has been super!
So much good advice. I would read carefully what has been suggested, discard what isn't good for you and use what suggestions you can. My elderly mother lives with me since she cant manage on her own. Sometimes you have to make decisions for your elderly parents since they get to the stage that they cant make good choices themselves. Perhaps she needs help with the shower and is too embarrassed to ask you. If you can afford it, a welfare nurse could pop in every 2 or 3 days and do whatever is necessary whether she lives with you or not. I was pretty firm with my mum. I said to her either she comes and lives with me, or else I wont visit anymore since I cant cope with her, her house and my own life as well! It worked.
Valery: I so feel what you're saying. I had been in your position for a few years before finally finding a way to have mom move into an Assisted living center. all the suggestions by the previous folks are very definitely on track. please consider these also:
there is a business called a place for mom (aplaceformom.com) that can put you in touch with facilities and organizations that can help. These include senior care and support groups. you also need to know you are not alone. you also need some extra hands to help you out.
when my parents started having problems several years ago, my mother felt that it was her duty to take care of my dad on her own. Unfortunately, her mind is not strong and her insistence on doing it all on her own, lead to some unfortunate consequences. After my father's death, she wanted to continue to live independently. I tried to help her where I could. when this got to be too much to handle, I got in touch with A place for Mom. they put in me in touch with a long list of folks to help me out (some free services and some that required payment). The short version of this story is that mom now lives at an Assisted living center. there are lots of folks that like her can take care of many of their own needs however staff are available to help remind her about bathing and medication. She also has opportunities to socialize with folks her own age and participate in various activities that she enjoys (bingo, book club, etc).
One other item to consider about a place for mom, there is also an online support group that you can post questions to who are more than happy to share their experiences and suggestions with you.
There is a new book out called "Passages in Care Giving' that may also help. it was published after my experiences however upon reading it, I don't hesitate in recommending it to friends going through this.
Hope all works out for you. Best wishes.
My husband is 62, and is at the end stages of Pick's Disease. All of our kids are adults with lives of their own. So it is basically just him and me. There was the time when he was terrified of water and would never get in the shower. We were lucky to give a shower twice a month. It would take hours just to get him in. He now takes a shower everyweek.
It takes perseverence, lots of love and knowing exactly how much you can do yourself. Several years ago, I finally admitted that I need help. In WA, we have Copes which helps with caregivers. He has gotten to the point where they are suggesting adding Hospice. The best that I can suggest is to do what you can, and realize there comes a point where you need more help.
Take care and God bless you.
I do have one more suggestion: do you have any doctors who do in home visits. I would suggest calling a local nursing home and seeing if they know of any who do.
www.eldercare.gov/
I am so sorry for the situation you're in, I know it is so hard for you. You love your mom, you don't want to make her angry at you & you want to preserve her dignity.She may not want to see a Dr. or accept outside help,but it sounds like she has reached a point where you need to step in & tell her that she has not left you a choice but to ask for outside help because she can't/won't help herself & you can't do it by yourself.
You already said you know her health is not good. By not eating right, not bathing, sitting in her chair all the time, having difficulty walking - she is in jeopardy of something major bad happening,
I know you don't want to upset her, but you also don't want to go to her home & walk in to discover that she fell shortly after your last visit & has been unable to get up or call for help during all that time. Or that she has a serious pressure sore that is not going to heal.
You love your mom, get her the help she needs. Maybe with good medical care, she will feel better & have more energy.
You need to love yourself enough to get the help also. You are going to severly pay the price for all this stress you are under, & your health will be shot before you know it-and then you won't be able to do anything for your mom because someone will have to take care of you!
All the advice given is good, but you must realize that you have a problem, as well.
You wouldn't harm a child by spoiling him/her, but you're spoiling, and endangering, your mother by not putting your foot down. You need to adjust your own point of view to realize that people's suggestions aren't about being "mean", but firm.
You're stressing yourself out, and putting strain on your marriage, by killing your mother with kindness.
Please take the advice given elsewhere in this thread, but most importantly, understand that being firm isn't being mean. It may be tough love, but it's love. Your mother needs help, whether she wants to admit it or not. You wouldn't indulge a stubborn child by letting him/her play with something dangerous. Similarly, indulging your mother in this way will inevitably lead to harm that will leave you buried in guilt.
As we age, parent/child roles ARE reversed. You need to accept that, and realize that you're not being disrespectful to your mother. You're being a good adult child. :)
You are an angel and your husband is being very kind too, in saying that your mother should move in with you. Would he come along with you to ask her to live with you? She may be afraid of being sent to a care home. To her way of thinking, this would mean losing her freedom and her life savings. She also might be afraid of imposing on you and your husband.
She probably knows how badly disabled she has become but is afraid of where she will be sent.
If she won't move, Suntydt's idea is a good one, you and your husband move in with mother.
I sympathize because I was sharing the care of my 90 year old mother with my sisters until a year ago, when she died. What I found worst about the situation was knowing that the only real long term solution would come about by her death.
Valery -- Your story is heartbreaking, and I don't know how you are managing at all. My mom is 81; I am 56. We have had a few difficult times, but she still has most of her wits about her. I worry about the affect of pain meds - and she has just moved into a smaller senior's duplex in town instead of her big house in the country. She has a bit of bladder problem, but doesn't let that interfere with getting out and about with her friends and assorted activities.
Anyway, what I wanted to mention was that you and your sister have to work as a team here, and your husbands have to support you in getting a more adequate and sensible arrangement for your mom. Think about how she is choosing to live - if someone was forcing her to live that way - no baths, sitting in a chair day and night, never leaving the house - it would be considered abuse. She can't be happy living like that!
It sounds like dementia and depression to me. You also are entitled to a life beyond looking after your mom. It is too much for you carry on as you have been doing. You must make her realize that she can't carry on as you have been. It is only a matter of time before some crisis occurs and she will be forced to make a move that she doesn't want to make. She may fall and break a hip. She could get sores and then infection from so much sitting. Something could happen to you - a broken leg, a serious illness.
You will be no good to your mom, your husband or yourself if you get ill or have a breakdown from the stress. Of course you love your mother, but in order to do right by her you have to take care of yourself first, and you sound like you are at your wits end. Please look into all the senior services that others have suggested and, with your sister and other family members if you have them, get her into a better living arrangement. She may be unhappy making the change, but if you find the right place - with you, in assisted living, whatever - your mom will be much happier.
Of course, this is easy for me to say - I am here and it is not my mom - but please enlist the help of your sister and find a solution that will work for the best for everyone -- you and your husband as well as your mom.
Somehow, your mother must be seen by a doctor. You must have an agency in your town that can advise you on elderly matters. Some older people don't want to go to the doctor, but they need care, and we have to get it for them any way we can. If your mother is incontinent, she may need nursing care around the clock. Of course, she doesn't want to give up her independence. That's hard for anyone. Is she able to move in with any of her children? It doesn't sound like she's capable of caring for herself anymore, especially if she's not feeding herself or getting around very well, but being seen by a doctor could possibly change that.
Valery you are an angel for being there for your Mom. She is just naturally getting older and she just needs some TLC. I can understand your husbands behavior but family sticks together. I am in the Nursing field and I can suggest you ask around your area for some in home care. Medicare will pay the bill and you will need to get her to a doctor. I wish you all the luck in the world. Some people would have just walked away from the situation.
If need be call Social Services and have them come out for an evaluation. This could be a great start for you or the worst nightmare depending on how they go about it. You definitely need help and so does she.
I wish you all the best.
Gem
I'd like to suggest calling your mother's local county health dept. and speaking to a social worker about this situation. They'll help you with this situation and improve quality of life. Your mother may not like what will happen, but in the beginnings of dementia, being in a palace wouldn't please her either. Keep this in mind.
I managed my father's care until his death and also was a conservator for the mother of a friend who had Alzheimers. An aide in her home on a short part of each day or a couple of times a week would really help. Sometimes it is necessary to become the parent to your parent. You need to step in and make rational decisions and even, if necessary, have a sort of intervention with mom, and all the siblings present. If she is unable or unwilling to allow caregivers to assist her perhaps reminding, again and again if necessary that if she falls and breaks something or becomes ill or develops a bedsore from lack of hygiene or sitting in a chair 24/7 she will have to go to a hospital and then a nursing home. Most elderly folks , if she understands what you are telling her, dread the latter especially. You or one of the siblings probably needs to get a conservatorship through the court system so you can make necessary decisions as she is unable to do so.
When we got the conservatorship for my friends mom we were blessed to find at attorney to come to the house and meet Betsy to help with the court proceedings. She had become a danger to herself and others as she continued to drive well past the point of safety. One day I just pocketed her keys and she couldn't figure out how get another set. That took care of that problem. Would offering to take her out for lunch if she cleans herself up, with help from you if needed work? What carrots can you hold out that might motivate her? Caregiver burnout is very common when caring for dementia patients, so be sure to have your own support system in place. Feel free to communicate with me if I can help!
My goodness. You are all such wonderful people. Your advice is so appreciated. My sister and I are very greatful to everyone that took the time to write. My Mom is never alone. I am here most of the time, usually 4 or 5 days a week. My sister is here the other days. Gosh, I am even afraid to go to the market some days.
Tonight I re read many posts. Tomorrow is the day for me to start putting my foot down. Being here is not the problem, although my hubby would differ here, it's the not showering and her not going to bed at night. I understand that when you sleep or doze all day, it's hard to get a full nights sleep. She has been at least napping on the sofa. I have explained bed sores to her, lack of moving around etc. I worked in nursing homes, so the care I can do and I understand more of what is needed than some. The doctor is a different story. I live an hour away, but my PCP, one of the most wonderful people I know, does nursing home care and home visits. I am going to ask him if he'd come down to check her out. It is an imposition I know, but maybe he at least can recommend someone down here. She will be really angry. But it won't last.
Thank you all again. The personal emails, the page responses. I feel like I have made friends.
I will update as to how my nerves are and if she will listen at all to me.
Heartfelt thanks to all the angels out there. Val
Valery, Your plea for help touched my heart. I too am caring for my mother (in my home). In 2004 my sisters and I had to "kidnap" my mom and take her to my home. She was unwilling but it was obvious that she was unable to care for herself. Social Services actually told us that if we didn't either move in with her or move her in with us, that they would "take over" and make her a ward of the state and put her in a nursing home. We had been reluctant to move her due to the same issues you are experiencing feeling that we didn't have the right to tell our mother what to do, after all she's the mom!
Moving her in with you is easier in some ways and harder in others. You will have to take life one day at a time because it will be one of the hardest things you've ever done. But, it will also be one of the most rewarding things you have ever done!
Get ready for the guilt, the tears, the anger and the sorrow as she steadily declines Yet, you and your husband will become the most loving, kind, patient, long-suffering, charitable people this world can offer. You will KNOW that God exists because you will see miracles happen regularly to help you care for your mom. You will come to know God more than ever because you will see that we all have what I call "spiritual Alzheimer's". We think we don't need his help, we don't remember Him, we shake our fist at Him and swear at him for requiring hard things of us. As you are kneeling on the ground and putting lotion on your mother's feet and legs, she may strike out at you and swear at you, it is then that you will realize how God must feel when we strike out at Him in our Alzheimer's state. You may find yourself sitting next to your mom wishing that she knew who you are only to realize that God too is sitting next to you wishing you knew who He was.
Yes, caregiving is very difficult indeed but I wouldn't have it any other way. Nursing homes can be very frightening places and I just couldn't bare to leave my mom in one. I'm so grateful that my husband is willing to share our home with her. You too must have a wonderful husband.
If you have any questions or need any moral support, please feel free to contact me and newhome1338-sales@yahoo.com
Valery, I have fm also and my mom sounds like a twin to yours! Mom was in a home for three years and now lives with my dh and I for five or better years! I will put in my two cwnts worth here, I know for a fact and from experience of her being in several nursing homes that i take better care of her even without doc's or difficulties with food and hygene! They allowed her to fall and break her hip, didn't make her stay clean or mind her nutrition. If she fought them they just let her slide. At least here with me I can try to make things I know are her favorite and she eats a little which is better than she did in any home. Mom is 87 and has given up, I know she doesn't have much time left so sure I will spoil the heck out of her. I can at least make the little time she has left as happy as possible. Tough love is fine for children who have their whole life ahead but for some elders on their way out soon I don't think it's approperiate. I want her last little time on this earth spent with those who love her and as happy as she can be.
Amazon has what is called "Sitz Bath." it is a shallow thin plastic bowl. You fill it halfway with warm/hot water and add a little baking soda or Epsom salt. Lift the lid and rim of the toilet and place the bowl on the porcelain rim. It will fit either round or oval. It is a pleasant way for elderly to clean the worst parts --I don't recommend soap as it can't be rinsed off easily, but I actually like Noxzema on a washcloth. It won't matter if a little is left on the skin. A towel will take it off.
I took care of my mother and it was really difficult both for me and for her. She had to stay alone until the evening when I returned from work. I hardly saw my children and husband. We decided to take my mother to live with us. But she didn't want to. So we decided to find a memory care community for her www.courtyards-al.com/
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