Not sure what I need, but feeling lost. Does it get better?

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Not sure what I need, but feeling lost. Does it get better?

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i really don't know what I need or why I am exactly writing this but I am feeling so lost I need to do something. The last five years has been really rough with my mom. She has continually struggled with health and has had a steady decline over the last year or so. Five years ago my mom had a surgery that about took her from us...i will never forget the ICU code call and the sternal rub that she didn't respond to. since then my mom has become a shell of herself, she has moderate dementia, can only take care of her own ADL's with assist most often then not, falls continually (multiple falls a day sometimes, and at least two or more a week). we've been to the ER three or four times this year for various infections, and found out she has TIA's in march, and she had another surgery in July to clear her sinus cavity of the impaction that we found out after the fact was actually a staph infection. since the diagnosis of her TIA's we have come to realize that she probably has them a lot more often then we think, and has had them for a long time. She ended up in a rehab for 20 days in September, but since coming home has only went down hill more. Since coming home in October the doctors have said that there is nothing else they can do for the TIA's, they can't figure out where the clots come from or what causes them. They don't know why her health is failing in general, why she is falling, or anything else other then to say that her body is starting to fail her in general.

We've had the discussions as a family to plan for next steps, and to talk about what to do if mom were to have a serious stroke. I struggle with all of these discussions, and though overall i agree with the decisions I really struggle with losing my mom. I have lost parts of her so long ago i feel foolish missing what we had, but I miss her. I don't know what I need but I need to feel better, or learn to cope with all this without going crazy. I work in a high stress job and have two high schoolers and stay incredibly busy keeping up with them. Most of the time I feel like I am just one slip from losing my mind and everything in life. Is this normal? does it get better? any ideas how to cope and live with this all!?

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I did get a hold of my PCP today. My wellbutrin was increased. My sister and I had a good heart to heart about what all I am struggling with. Still going to be a rough road but I put words to feelings and that has helped.

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For clarity mom has been using a walker for many years, initially she continued to fall but only when she wouldn't use her walker/rolling with the seat. She's been in rehab for treatment/strength training and that helped for a fast minute, and she just ended PT because she had reached maximum benefit. She got her wheelchair ordered today...well my sister did. She is falling now because of weakness, up to this point she would fall because she had a TIA, or she would not use her walker, or if she had a UTI she would sometimes fall but this last set of falls are more often and more intense then what we had before. They got her to agree to some lab test/urine analysis/chest xray. She refuses more MRI's/CT/PET scans because she says they will just keep showing the same thing...basically her TIA's doing some damage slowly but surely. We're hoping the results will show if this is what we think and she's officially in renal failure...not that we hope she's in renal failure but that it will show what is going on. Guess we wait and see what is going to happen next

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If your mom continues to get worse, things will probably not get easier. But maybe you can get grief and loss counseling NOW before she's totally gone. That might make it easier to deal with.

Also, it's been my experience that you can't get psychological counseling in a hurry, so you want to start the process before you reach the end of your rope.

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I agree with earlier answers: you need to figure out the falling thing. It might be something that's easy to treat, like low blood pressure, dizziness from meds, dehydration, loss of balance, or weakness. You need to know why she falls to fix it.

Instead of starting in with a wheelchair, has your mom tried a walker along with physical and occupational therapy to build up the strength to use it? That could keep her from falling so much.

If she wants to keep on living even semi-independently, being able to move around is very important. Once you're confined to a wheelchair, things might get worse even faster. If she is serious fall risk, which seem to the case, getting in and out of a wheelchair can be dangerous hard work. Once you get to the point where you are dependent on others to transfer you between bed, wheelchair, dining chairs, and comfy chair, your life becomes extremely limited.

If you decide she needs a wheelchair, there might be agencies in your town that will GIVE her a wheelchair if you're having trouble getting the doctor to prescribe one. In Austin, TX, the Austin Groups for the Elderly (AGE) will give you whatever equipment you need. You just give it back when you no longer need it.

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Again, you should not have to scrounge for a wheelchair. Once declared "medically necessary" by your mother's physician, an order is put in with a medical supply company that honors Medicare, and often (at least in Michigan) a medical supply company delivers it to your Mom's home. You need medical direction and not to be left on your own. This is a medical issue, not a shopping issue! Good luck.

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Can anyone call a few churches and see if there is a wheelchair available? You could offer to return it when you are done with it. I have one from my Mother, but I am in FL. I feel badly that you do not have one. I just haven't gotten to giving away, donating Mom's belongings. This is another process once they pass. I won't go on about it here. My heart goes out to you! You are WAY too busy! I hope you get a respite!

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Has your Mom's doctor recommended she be evaluated by a physical therapist (PT)? It seems to me that allowing a patient to fall multiple times a day is rather dismissive. "medical necessity" of a wheelchair means that Medicare will pick up the cost and the PT will work with your Mom to show her how to use it. Falling can be fatal, I don't understand why her physician hasn't done a full evaluation. And as for you, please be kind to yourself and understand that watching someone fail in spite of your best intentions and efforts, is traumatic. When failing goes on and on, you become battle scarred, dead inside. Your guilt about living 60 miles away is because you must have been close as a family, and your sisters were able to continue while you are like the person left behind. Not that they mean for you to feel that way, you just do because you know you would have stepped right up like they are if you lived 1 mile away. The guilt I felt for living 2000+ miles away was and is tremendous, but my husband (a retired psychologist) says human guilt is only useful when it does some good. When it is just eroding your own sanity (and nothing else), it is maladaptive. So focus on all the positive you do. Face that you have limits. I really appreciate Scared's recommendation of the book "The Language of Letting Go," it sounds useful. But I'll bet you don't have time to read. And get your Mom to a doctor who will write an order for a medically necessary wheelchair. My mother in law actually required an electronic lift chair as well, to be able to stand slowly and pivot to her commode (which was braced into the floorboards for stability). Your Mom's fate is not to keep falling until a fall kills her. It is to be supported as her body declines, with kindness and comfort. I really appreciated your words, as I think you described the unique kind of depression that comes from the numbing of watching someone fail, day after day, month after month. Your Mom would have wanted better for you, and for her. Find a doctor who will work with you all to keep her safe and not have to walk. Regards to you and all you are.

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Yes!!! Home delivery is the way to go. I ordered our Thanksgiving dinner from FreshDirect -- my brother said it would be a shame not to cook. When I said then he could cook, he relented. The food was great and everybody was more relaxed. Highly recommended the more delivery the better.

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Sometimes I think it is all part of the different life steps when it comes to elderly parents. When they do pass on, part of us feel lost but on the other side of the coin part of us feel like the world is finally off our shoulders.

No matter how much or how little we try to contribute to helping our parents, it is quite stressful as we are put into a situation where we had no training, especially those of us who never raised children.

I know I am constantly thinking why don't my parents hire people to help them out, or use the home delivery of groceries. Good heavens, that is what I am doing for myself because I don't have the time or energy to fix or shop for myself :(

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I really appreciate the messages from everyone -- I often feel panicked and the looming darkness thinking about when my parents do die, even with their decay and dementia now. And it's not something you talk about. So just sharing this here -- that glimpse into the abyss -- is helpful. Thank you everybody for sharing.

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Aebuell, your answer was more helpful than mine. Good job!

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You're very young to be losing your mother, number one. Number two, if taking care of her earlier history was your specialty, it's very hard for you to take a back seat and let your sisters step up (for heaven's sake do let them!). Horrible to know it's all going on but be able to do nothing practical. But you're going to have to go easy on yourself. What would you tell one of the Young People that you help? Something about prioritising, accepting, realistic goals?

It sounds as if you need to add space to grieve and space for extra time with your mother to that huge schedule you've already got on your hands. The good news is that it sounds as if your family network is fantastically supportive. The bad news is that probably no one can do much to alter or delay your mother's illness. This is going to be a horrible time; you're allowed to be upset, you're allowed time off, you're allowed to seek help. Let people help you, let them share. You will get through this, just don't expect anything to feel okay while it's actually happening xxx

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cjaharmon: The not knowing what will happen next is the worst. I have anxiety all the time taking care of my father. Most emergency things happen in the middle of the night. I have trouble sleeping because I have become such a light sleeper, listening for anything that may happen. I took care of my mom for 8 years and now dad with his parkinsons for 6. Talk about burn out. I am on anxiety pills, which help, but I still have panic attacks when things happen. Try to be strong and I am sending all of you a little extra strength as well. Prayers and calming peace to all of you! Hang in there, it is not easy. I often find myself wishing for my own life and feeling guilty about it, but know I am not alone and either are you. This is a great place to find answers, options and above all very nice people that share what they are going through. Hang in there!!!!

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Oh yes it does get better. The more educated you get the better the situation gets. Look to the Alzheimers association for help. The thing that was most helpful for me in regards to my husbands Dx of AD is that once the Dx is made, the patient is forgiven 100% of the time. That is a mind set and it keeps things running smoothly. OK honey, that sounds fine, Oh really, Etc. etc. etc. It may seem fake but logic & critical thinking are not up to snuff or not there at all so just go with the flow, relax, be thankful for the memories still there and don't forget to laugh!

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It will not get better. Modern medicine has kept our parents alive way past the time they would have died years ago. This is both a blessing and a curse. It is extremely hard to let a beloved parent "go." There is no way out of this hell, which is why I don't believe in hell in the afterlife. After we have lost everything we have ever loved and cared about, what more can a loving God do to us? You need to add some kind of respite into your life to cope with all of this. It is easier (if such a word can apply here) if the person you are taking care of is someone you love and not someone who hates you. I am sorry for every one of you losing a loving parent or relative in your family.

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It can be very overwhelming because we are not endless sources. Been there. I talked to a therapist to vent and get some of the stress "out" of me. Also found a grief support group at a local funeral home. Went to and still attend spiritual services every Sunday. It's non-denominational, called the "Bodhi Center" in Chicago. These sources provide much needed comfort. You need comfort too. Go for it my dear. L, Jill

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It gets better when she.... well, the cruel truth is that's when it will get better. You need to deal with that.

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You are lucky you are not living with your parent. Although there would be less guilt feelings because you'd be directly involved in the back breaking day to day care, you would be even more overwhelmed with the relentless chores that would be required of you. My mom who is 101 lives with me so I know first hand. I luckily have a paid co caregiver who comes in 5 days/ nights a week. Even with the help I get I still feel like I have set my own life aside and being sucked into the world of a 101 year old. Please know that your dad and sister who take care of emergencies, falls, hygiene, food and daily care are more overwhelmed than you are. I am not at all trivializing your feelings as I feel your pain and urge you to take deep breaths and do what you need to get back on track but the family members in the trenches are coping with similar feelings and more. Please count your blessings that you are not there. This is a gift. Good luck!

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Thank you all! You are all right I need to accept this, that is what I am struggling with. As a therapist in mental health, i know all about the grief cycle and I know too much about the death and dying cycles from my different times in different jobs. Sometimes knowing too much makes me my own worst patient. Calling doctor today for an increase in meds (i love it but I think I need a little more). and waiting to hear from the sisters. We are asking for Hospice today. Nursing home isn't an option for various reasons including not being financially possible with the current status of my parents home/finances. But we going to try to get hospice help. I think if we can get them in I can finally take that step back and just grieve, then I'll know that it isn't getting better and I can work on accepting this. We should have the order for a wheelchair from the neurologist without an issue, and we have home health care in for rehab from her falls before so we can get insurance to cover it. Just so frustrating! Thank you all for your responses, I can't tell you how much they mean today.

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I say the serenity Prayer everyday it just reminds me that I cannot control or fix everything and to accept that and be content with what I Can Do.It doesnt make every day easier but I dont feel guilty about anything that is not in my control!!! I take celexa and it helps my anxiety sounds like you have the meds that help you!! My Prayers are with you!!

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I'm dealing with similar issues with both mom & dad. They are in assisted living, but I'm the one who manages their care, etc. Between the two of them, there have been multiple trips to the ER, hospital, and rehab stays the past couple of years. I started on this with a heart full of love and energy, glad to still have my parents, and to be able to give back to the people who had given so much to me. I wanted to help bring some happiness and peace in their "Golden Years". I have reached the point where some days I feel like the life is being sucked out of me, and I can't do it one more day. Then I wake up and do it one more day. Does it get better? My experience has been one step up, two steps back. I do not expect to look back at this time with fond memories. I hope I'm wrong.

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cjaharmon, I agree so much with what several others have said. When I first came here to take care of my mother and father, I was stressed beyond words. One of my biggest problems was that I wanted to fix things. If I could get them better care or cook them more nutritious meals or make them happier, then they would be better. One day I sat down and realized that I could not fix things. My parents were dying and I just needed to see that they were as comfortable as possible. That took so much off the pressure off me. I am not a religious person, but still I put it in God's hands.

Your sisters are nearby and your plate is full. My instincts say that showing your sisters support would be time well spent. Do they have things they need or want to make their lives better? Would it make it better if your mother was in a nursing facility where family could visit and she wouldn't fall so often? There are some very good nursing facilities available if your sisters need help. They and you are important, and it is not failing to get help when it is needed. None of us like to consider the possibility of putting our family in long-term care, but when things become too bad it can actually be a good option to consider.

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Good Morning Everyone,

My mother has Alzheimer has for quite sometime. I did everything to keep her living in her house. There was someone with mom 24 hrs, Most of the help came from family who had their own family along with physical/mental health issues going on. I even hired an agency to help out and that was just eating away at the money. This consumed me like you wouldn't believe it...I cut my hours to part time , thank god for my husbands income. Mom also had two falls less then three months apart that result in two surgeries and rehab. My sister who lived with her decided to move out when mom was in rehab the second time, so as you can see it just wasn't getting better. I was doing my best to keep myself together but the stress was huge and it was all coming down. When she had her second injury a broken hip I decided to put her in the nursing home, actually the one she was in rehab the second time. I always say it was the toughest but best decision I made. I still have matters to take care of for mom but I finally understand the importance of taking care of yourself and sometime it means to make difficult decisions.

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I just joined a Caregivers support group. It is the best decision I've taken in years.

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It never gets better......only worse. I'm going through it right now. Why does life have to be like this for the elderly and caregivers alike? Life is so cruel. To make the elderly suffer with their health, etc. and the caregivers have to suffer with taking care of them. It's a very vicious cycle. I would not wish this on my worst enemy.

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As we ask ourselves if it gets better... I recall that our parents will not grow up and become more able bodied as our children do/did. They are aging. It is a natural process that we will all face.

I received one piece of advice here that helped me immeasurably as my Mom was aging. It was suggested that I tell her I love her and hug her every day, or when ever possible.

It did indeed become more and more difficult and then one day my Mom passed away. For all the years I have to live that are ahead of me, I know that I treated her with kindness and compassion, to the extent that I could and I am thankful that I told her that I loved her and hugged her whenever I could. Now, it's over.

Did it ever get better? It's all a matter of perspective. I'm thankful for the time I had with her, although it was the MOST challenging time of my life. I wish for you the same... that you can navigate this time with grace and compassion for YOURSELF as well as for others.

Take very good care of yourself, while you are caring for others. Do everything you can for you, because you (and everyone around you) needs YOU to survive this.

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First of all, NOTHING in life is "normal". When we medical professionals don't know how to tell the family of a loved one your fill-in-the blank has no chance of surviving, we say there is nothing we can do. This immediately sends a "fight or flight syndrome" within people, and they search for all kinds of remedies wanting to keep their loved one alive. NO ONE gets out of this world alive. We all must die. We all must learn coping mechanisms if you are to continue living. With a high stress job, high maintenance children (when are they not?), the best advice this medical person can give is to reduce your stressors. Accept the fact your mother is going to die, just as you are. Know that what could be done is already being done, and keep her as comfortable as you can for the time she has left. Focus on those high schoolers who are probably doing more undercover stuff than you know and could wander without your constant watchful eyes. They are your future just as you are your future. The fact you care about your mother's well-being shows me she did a fantastic job of raising you! Now, your energies need to shift into your children, husband, job, and start detaching yourself from the nasty part of dying. It is depressing to know someone you love is getting ready to die. Keep the good times ever present and stop focusing on what is to come. Her body will cease to exist, but the memory of what she has taught you will remain in your heart and mind forever. My blessings to you and your family and may God be with you all!

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It's not all on you. You've got your sisters helping out, so that's great. Imagine if you didn't exist or refused to get involved - someone would still be helping your mom, whether it was family or social workers. But since you are here and you do want to help, your contributions are definitely helpful and your mom is better off than she would be without you. That perspective was the single most helpful thing that I learned from my therapist. I can definitely relate to how you feel.

As for the health issues - this is just my personal perspective, but with my dad, I am mainly concerned with keeping him as comfortable as possible, not necessarily resolving every medical issue he has. The reason is that I believe that it's his time to go. Dementia is a fatal disease and he's never going to truly get better or be himself again. I hope for his sake that his suffering can end sooner than later. So for that reason I don't worry too much about the medical issues, simply because I can't. There's just too much and it's overwhelming. I have to trust his doctors to do what they need to do.

But, I don't what to suggest regarding the falls, especially if your mom's falling even while being assisted. Will the wheelchair help or will she still try to get up and move around on her own? If you really think that the wheelchair is going to help, then look around your town for a used one. Check Craigslist, thrift shops, garage sales, auctions, flea markets, or a church if you or your sisters belong to one. The good thing is that things like that (walkers, chairs, other mobility aids) are relatively easy to find used. Who knows, depending on the insurance, it might even be cheaper to find your own if there's a co-pay involved.

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Oh my...I wish it did get better, but, in my experience, it has not. Like you, I miss the parent I HAD. My dad has been with me for 4 years, after a broken hip. It has not been horrible until the last 6 months, after another fall. I now jump every time the phone rings, as I am waiting on a placement for assisted living for him, as lack of sleep, physical exhaustion, and no daily happiness are wearing me out. I feel like I am on the edge of tears every day. I quit my job that I loved last year and retired early, thinking it would help, but it has been worse without an outlet. I have three grandchildren out of state who I cannot visit because there has to be 24 hour a day care for my dad.
On another note, my mom died at 81, having never been sick a day in her life. My dad, now at 91, has spent the last 10 years struggling with many health issues. Given my new perspective, if I could choose, I would have preferred to remember my dad as I do my mom and I would prefer to go as she did...making cookies.
Have you involved Hospice? They have been helpful to have others involved in my dad's care, but I think he's not going to make "the cut" soon for their care.
Hang in there, cjaharmon...I'm so glad for you that you have sibling support!
Also, there are places around to get a wheelchair for free. Ask around. Peace.

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I would suggest that you get some counseling to help you cope with these feelings. You seem to be very stressed out with your job and family. Get some help from your teenagers father to cart them around...

Try not to do everything yourself! Take time for yourself..

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Not sure what I need, but feeling lost. Does it get better?

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