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I'm 20 years old, and this is the first time I've had to deal with something like this. Ever since I was about 12 I've helped care for my mother. She hurt her knee, it never was fully recovered. She was mobile and all, but she still required my help from time to time with daily things such as cooking, shopping, etc. Two months ago she had a severe stroke, she has made a lot of improvement due to rehab, but still requires things such as transfers to her wheelchair, bathroom, bed, etc. She came home with us (I am currently staying with older sister.) And quite honestly it's been hell, I barely get any sleep due to the fact I have to wake up multiple times in the middle of the night to either change her, or medicate her because she is in some pain, it usually results in me sitting up with her 30+ minutes a time till she goes back to sleep. The only times I get any rest are if my sister has enough time from work + her kids to take over for a while. Even then, she is not strong enough to lift my mother on her own, so I still have to help in those cases.

I believe, and so does the doctor, that the stroke has effected her in ways that most of the time I don't even recognize her as my mother.
Problems we are currently having involve;
-Her wanting to eat all the time, she is overweight but not obese, still, for some reason she's hungry around every hour or two and is picky about her food. If we don't comply she tries to guilt us into giving her a snack or something by trying to convince us she is "starving" or "tired of being hungry all the time." Ontop of the fact she doesn't want to follow the doctors advice on what to eat, and wants to eat junk foods a lot of the time.
-Her wanting to go out all the time. Almost every single day she wants to go out somewhere, or if she hears we're going to go on a shopping trip for about an hour she wants to go. This is a problem because transferring her in and out of our current car is an extreme hassle.
-She is very stubborn and impatient as well, so if we want to go on long trips (say a few hours shopping at the mall for the holidays) within around 40+ minutes she gets very antsy and restless and becomes rather rude towards us, at that point our shopping trips turn miserable and we just end up going home.
-She's been having episodes that are on the borderline dementia, if not there already, where she's completely irrational and thinks, also attempts, to do things she simply can't do such as walk on her own, or get out of bed and put herself into her wheelchair. With her current physical state this is not at all possible in any way, we try explaining to her but she doesn't listen.

At this point, it has become too much even for the two of us. I love her very much, and I realize a lot of her mental problems she's having aren't her fault but they are driving me nuts, on top of the physical stress (I am getting very sore all over due to the multiple transfers everyday, plus no sleep) I honestly feel I cannot do it much longer. We are considering multiple options, including my brother renting a house to stay with her and hire a nurse while he's at work, as well as me going over there every so often to help out.
However setting that up, if we do, could take a few months in which case we are considering putting her in a home until then.

Knowing her though, the fact she hates anything that isn't her home, this would be extremely hard on her, and the thought of that is painful. I feel like all this is killing me, so I know I can't do it much longer, but emotionally I'm feeling worse at the thought of having to put her in a home, even if it's just for a while.

What exactly can I do to get through this? I try to do things such as remember all the times she is, quite honestly, being a bitch to us so I won't care, but that doesn't help much. It's just replaced with memories of the times she's nice and pleasant to be around. I don't know what to do.

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ExtremelyTired, my heart goes out to you. You and your sister and your brother are in extremely challenging circumstances.

Since you are twenty I'm guessing that your mother is in her sixties or younger. This means there may be decades of needing lots of care. If indeed she has the beginnings of dementia the amount and kind of care will increase and be more demanding.

Something has to give.

You cannot continue to have interrupted sleep. Been there, done that, and absolutely would not have been able to continue to care for my husband at home if his night-time restlessness hadn't been solved. Perhaps discussing this with her doctor would provide some help. Longer-lasting pain medication, for example. If her nighttime needs cannot be reduced she simply has to be somewhere that is staffed to take care of residents at night. Can she afford to bring in an aide or caregiver for this purpose?

If she lives in a house with your brother and he has a nurse there while he works, who is going to get up with her multiple times a night? Your brother cannot do that and also work. Sorry, it just can't be done. Is there money for both a daytime nurse and a nighttime aide? How old is your brother? Is he married? Does he date? Does he have a social life? Bringing a parent who needs 24/7 care into your life is a huge commitment that could go on for decades.

She may hate anything that isn't her home. But if she moves into a new environment with your brother then that would become her home. If she moves into a care center that would become her home. A move may not be what she'd like, but it sounds like it is inevitable.

How can you get through this? I send you hugs. This is an extremely hard position for a young person to be in. Please do not dwell on the bitchy times. Your mother's personality changes are not her fault and that is not a good way to remember her. But they are not your fault, either, and staying in a situation that is killing you or putting your brother in a situation that will kill him is not going to change her personality for the better.

Keep in mind that you love your mother very much. You want what is best for her. You wish with all your heart that you could provide what is best for her. But she needs 24/7 care. Because you love her you need to be willing to accept whatever will be best for her.

Financial considerations enter into this. What kind of income/assets does she have? Can she afford to bring in professionals so that she has around-the-clock care? Will she be private-pay if she goes into a care center, or will she need financial aid such a Medicaid?

The other thing that you have to accept and take to heart is that placing your mother in a care center if that is what is best for her is NOT abandoning her. You and your sister and brother will visit her often. You will have meals with her. You will take her on outings occasionally, keeping them short to not tire her. You will advocate for her and be sure she is getting excellent care. Somebody else will do the daily care. Somebody else will change her during the night. Somebody else will supervise how much and what she is eating. You and your siblings will continue to be the loving children you are, without the exhausting responsibility for her physical care.

I sincerely wish you well in discovering what will be best for your mother and in accepting your own limitations.
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Sorry to hear of the difficulty your family is having. My father had a stroke ten years ago. He was only 66 at that time the first year was the most difficult. He needed to adjust to being cared for and not independent like before. Not everyone is able to care for a sick love one. Having help is not in anyway not doing what is best for everyone concerned. I wish you the best.
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Reading your story breaks my heart and I am so sorry for all you are going thru. Just keep remembering and telling yourself that you are trying to do what is best for HER! It is not in her best interest to ruin what is the wonderful relationship that she has with her children by asking you to do things that you can not do. I know that this is not the answer for everyone but I have so many friends who have had the same struggles as you are having and by the time they finally give up and put their parent in some other type of living arrangement, the loving feelings that they had for their parent is gone. It is a tragedy that this has to go on but your mother will be better taken care of if she has different, rested, professionals, taking care of her needs. It will be better on all of you if you sit down with your brother and sister and any other siblings and talk thru this situation. I know that they may not be doing this but DO NOT let them guilt you into continuing to do what you can not do. This solution has to work for everyone and not just your mother. Just carefully chose a facility that will take good compassionate care of your mother and then you can all visit her as much as possible. She will get used to living outside her home eventually but the transition will be hard on all of you so stay strong. I will certainly keep you and your family in my prayers and stay strong!
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Wow. I can feel your pain and wish you peace. When I was having trouble coping I looked up on line for caregiver support groups in my area (at the adise of my charges Dr.). I found a group that meets once a month. Honestly, it was difficult to admit I needed help especially from stranges. I found relief after the first meeting. Sharing stories and advise, the leaders of the group (Dayhaven, NY) have plenty of reference material. It doesn't solve your problem directly but it gives you the knowlege you need to help yourself as well as your Mom. And for me...when my charge found out I needed a support group she eased up alittle and started to think about how she was effecting the people around her. No arguing, no stress, just honest caring...not just one way.. but back and forth. Good luck, your young you deserve a good life , and at the risk of sounding callus, you need to act sooner then later cause the years slip by.
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Go see what the facilities near you have to offer. You may be pleasantly surprised. Consider calling the Council on Elder Affairs for your area or your state Elder Affairs for guidance. If you decide to go the ALF route, you will see that you will have an opportunity to spend more quality time with your mom. Your family seems to be very responsible and compassionate. I would like to think that is in part due to your mom. If she were in her non-afflicted brain and body, I bet that she would want her children to have a happy and healthy life. I know my mom, never wanted to be such a burden to her children. Try, hard as it may be, to remember, her behavior is a result of her affliction (brain damage). This site will help you to know you are not alone in your struggles. Stay connected.
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ExtremelyTired: Please, please follow the advice of these loving people. I am new to this too, I just had to put my mom in a NH. I was born when my mom was 39. She's 95 now, and I have been caring for her and worrying about her all my life. (Dad left home when I was 8, big sis got married right after that- she was 14 years older). Now, big sis is going to be 70 next month, so at 56 I'm still the "baby" and the most physically fit one (ha!). Please consider the NH or some type of assisted living for your mom, even if it is temporary. They great folks on this site helped me see that it was going to take a while for me to "digest" this. I have never been without my mom. The only time was when I was first married. 5 years later we bought a home where she came to live with us . She had her own mother in law flat downstairs, and was always independent....but my 1st married ended 2 years later! IT's been 32 years, and this is the first time in my life I've ever been alone in my own home during the day! I remarried 21 yrs ago, and my daughter is now grown and married with children. Don't let what happened to me happen to you...I never thought it would but after all these years of worrying about my mom (just like you have been since you were little), my body finally had an overload! I had a breakdown, and put my poor husband and daughter through "you know what". I had no idea I was doing what I did (6 ft security guard told my husband he had to use all his might to get me down- I guess I'm a fiesty fighter at 56)! Now I can laugh about it, but I thank God I'm healthy and I responded immediately to the anti-physotic drug they gave me. My potassium was at a critical level due to not eating right (putting too much attn on my mom's health, and not mine).
I had to be hospitalized, and guess what? Mom survived. Yep, 95, in the nursing home, and she was doing better physically than iI was. It' a tough battle we have ahead of us because she was diagnosed with Lewy Body Dementia. JeanneGibbsl gave me some great advice, and as I see in the above posts, she gave you some great advice too. Take it. These new friends of ours have been through it. You're young, and obvisouly a very loving, kind person. You are a good daughter, and the only way you will be able to carry on without breaking and resenting is to get break. If your mom is being cared for by professionals, you will be able to see her and spend more quality time for her. I still can't come to grips that my mom most likely won't be coming back here to live (see, I have to still say "most likely"). I'm still not ready to face that, even tho I know it's reality...but I have been able to bring her home for a visit, and it was a positive thing. It's been 10 months already, but this takes time to adjust. I do have peace of mind though....and for the first time in my life, I'm able to leave her in capable hands and not worry when I see my daughter or my grandchildren. Everytime I left my house, when I returned I wondered if mom was going to be alive. Horrible way to live. I don't want you to spend the next 36 years like that! Please, keep us updated. You're cared about very much!
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Sometimes its hard to take that step, especially when its' our parent. But we have to on occasion! Your mom would really not want to burden you with something that is getting increasingly harder. There is "In Home Caregivers",That's an option too. They come to you at the times you decide and help w/ toileting,shower/bath, meals,light house cleaning and even laundry ...etc! In NW Wash. State a company called, (Home Attendant Care) was who we had help us! We were fortunate to find such a caring staff, who went above and beyond to help with our questions and needs. I called several places and spoke to a number of people before deciding. It all came down to my intuition, if , when I called they were nasty or curt with my querys I'd move on!! If I liked how they came across to me I would hear them out. It all comes down to what you feel is right, for you and your family. I hope this helps some, but for now this might be a short term solution? Good luck and take care of yourself!!!! Godbless
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I am going through this very same thought as it comes a time where those hard conversations and decisions have to be met with regardless the pain or guilt it may inflict on us caretakers. It is either that or the caretaker ends up sick and in a hospital and then who is to care for the patient. I feel for you too and I know exactly what you are talking about since I am going through it myself. After these holidays are over I must make that conversation be heard and do what I need to do before I end up also too sick to tend to my own life. Hugs to you.
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I admire your diligence and your willingness to care for your Mom... I think it may be time to think about you, I know you are thinking that sounds selfish, it is NOT! I know that often times people think nursing homes or assisted living facilities are terrible places, that is not always true. In a nursing home or assisted living your Mom would be cared for by people with training who are qualified and want to be there(most of em). She will also get meals prepared for her, and be around people of her own age. There will be activities for her to participate in if she wants to and there are some other benefits too. YOU could have a life and be able to do something fun once in awhile. I have carried for loved ones in my family ( my Grandparents and my Father) I do understand your heart! Please consider that you could be caring for your Mom 24/7 for many many years. take care and please know people care about you...
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@ Jave I so love and appreciate what you just wrote since I am in the same situation. You said it Spot ON!! Thank you. Hugs
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crystal1224 you are very welcome... take care and hugs to you too!
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When your caregiving begins to affect your health so severely, as it is yours (exhausted and probably more you're not telling us), it is time to get Mom or whoever you are caring for someplace else, whether assisted living, nursing home, or whatever. You've done your utmost and now it's time to take care of you. (The self-sacrifice thing just isn't realistic thinking.)
I'm in the same situation myself, mostly, but just not at the stage where putting Mom in a facility where someone else will be caring for her is necessary just yet. (But it's getting close to that point. By the time it gets to that point, I don't think she'll really know much of what's going on since she has been diagnosed with dementia and Alzhemier's. She's not bad yet, but when it reaches that point....) I don't really have enough time to take care of myself anymore (again). When anyone reaches that point, it's dangerous territory. Like you, I know what I'm facing and it's not a happy decision--until, the person you are caring for is situated is a place that is going to be obviously good for them (proper care, proper food, proper physical therapy, etc) you suddenly discover, "Dang, I have time now to take care of me today!"
I also strongly suggest finding a caregivers group. Online caregiver groups are very beneficial, but I'm of the opinion that personal contact is much healthier. (the hand on the shoulder, they sympathy in the eyes, the hugs) It's real stress reliever and you will also find that people in the same situation can give you very helpful advice on how to handle situations as well as leads to where you can find help. They can tell you what local facilities they think are the best. Their opinions of which doctors are best for dealing with alzhemier's and dimentia is very valuable and will save you time. Word of mouth really is best.
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So many of us are going through this same kind of hell on earth. We all must learn to accept facts without feeling guilty. We are doing the best we can. That is what I tell my dear husband who is now in a nursing home. It all started with his falls from lack of balance. I had caregivers at home from an agency called Home Instead. They are expensive; but their caregivers are bonded and have police clearances. You must hire only certified people. When my overweight husband was too heavy to get in and out of bed , wheelchair, scooter, and bathroom, we had no choice but to put him in nusing home care. Does he love it? No, but I tell him again, "We are doing the best we can and you are ,too." He accepts that. Unfortunately, I learned that dementia patients DO know that they are confused or something is wrong. Please don't let Mom's situation make you ill! I'm sending hugs and prayers ! Corinne
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Hi Everyone, Things are getting to a critical point with my FIL (101 years of age). He can no longer stand and transferring him is next to impossible for the caregivers. My MIL says that a lift just won't work in their home so the next thought is to move their bed into the living room. I don't know if this means that my FIL will be bedridden (although it's coming one way or another) but any kind of a change is very difficult for him due to his dementia. The family is concerned that if he was placed in a NH that he would die. When he was 94, he had a partial hip replacement and during the 3 months that he was there he never attended any of the "social" functions stating that everyone else was too old. He seemed depressed (understandably) and can't imagine him able to make the transition at this late stage. Has anyone been in this situation and what did you do.
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happyjack, yes, if FIL is placed in an NH he probably will die. But you know what? He is going to die anyway. None of us lives forever and at 101 he is not likely to go on indefinitely. I think the real question now is more about quality of life rather than how long it lasts. Would he get better care and be generally more comfortable in a skilled nursing facility or in a bed in his living room? How much does he recognize where he is? How much interaction would his wife have with him in her living room? How much in a NH? (Factor in exhaustion for helping to care for him.) If the caregivers at home cannot transfer him to a wheelchair or toilet can they change him in bed? How would his toileting be handled in NH? Which would he prefer?

At home or in a NH he is probably going to spend most of his time in bed and/or a wheelchair. He is not going to run down the hall twice a week to play bingo or participate in sing-alongs. But which setting would give him the most peace in his current state of health?

He is not going to live forever. While he is living, try to make decisions based on what will be most comfortable for him -- what will provide the best quality of life for him. And any decision has to also be based on what is actually feasible.

Best wishes to your family as you struggle with this tough situation.
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Happyjack. I agree with jeannegibbs. I dreaded puttin my mom in a NH 3 months ago. I didn't give it two weeks. She was always so attached and dependent on my, I just knew if I was away from her for just a little while she would die, and I was besides myself. She is 95 and all of a sudden it was like her mind just crashed! She was diagnosed with Lewy Body Dementia and we found out her paranoid hallucenations and sudden unresponsiveness were all part of this horrible disease. Then 3 weeks after being in the NH, having physical therapy, proper diet, round the clock care, her memory came back! It was like a miracle...then she declined again. Now I have a book "Caregivers Guild to Lewy Body Dementia. A life saver. I now know that this is going to continue happening til the end. I'm encouraged to spend as much quality time with her on her good days. Nobody wants to be in the NH, but seeing a 95 yr old improve physically even tho her mental state is declining, I see it was the best decision. My health was the one that was suffering. These great people on this site really helped me. They encouraged me to give it a while. I also have to adjust, I had her with me for 32 yrs. I'm getting therapy, I'm finding friends on this site who are going through the same thing, and I signed up to attend my first meeting for families of ALZ/Dementia patients next Friday. You have to do it for yourself. Even th Bible says "Our years are 70 or 80 if we have special mightiness". My mom and your FIL obviously have special, special mightiness. My mom's mom died with she was 48, with her father whe was 51. After that she devoted her life to me, my sis and her grandchildren. I'm 56 now, so I had my mom longer than she had hers, for which I am grateful. If I don't take care of myself though, my daughter and grandchildren won't be so fortunate. We're here for you. I know you'll make the right decision.
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