This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
You're right about everything....it's only fair to do things her way...yet set limits on what I will and will not do.
I am on disability for some medical conditions and she's agreed to pay me to take care of her three days a week so it's a win win for us...She doesn't have to pay an agency extravagant fees but now that she needs more care, she has pcas coming every other morning, sharing caregiving with me...
Because I'm on limited income, I feel it's right to move in permanently...eventually she will need around the clock care and it's not right to have a stranger live here.
Two of my docs wrote letters, i just have to show them to the landlord this week...i expect them to keep the deposit...that's understandable...Should I wait until I show the landlord the letters and see if she'll let me break my lease, before I give notice? Do you mean stop paying rent next month?
Thank you so much for give me feedback..Have a great day!!
This whole experience, which I've only been involved with for three months at this point, has already ship wrecked my life! I have no time for anything any more. Not my poor husband of 35 years. Not my adult children, or two precious granddaughters, both toddlers, one an 18 month old who stays with me in my home five days a week while her mother works! I am heartbroken, physically and emotionally exhausted, and cannot even imagine what kind of future lies ahead for any of us.
Right now, we (my sister's family and mine) have an amazing 'care team' in place, thrown together as best we could given our limited resources (physically AND financially), but realistically? How are any of us going to be able to endure this daily grind with no end in sight? And is it really fair that so many people be required to sacrifice their lives for the good of one?
Our situation is further complicated by the fact that I am my sister's only biological relative, and she mine. I love her with all my heart! My sister's husband? He is only 45 years old. A second marriage for both of them, they have been together for ten years. Though they loved each other deeply, and he has stuck by her as she has descended into her dementia, how can he be expected to stay in this now empty relationship at such a young age? He has so much of his life still ahead of him.
And then there is my sister's eight year old granddaughter, a child she has raised since birth. I cannot even imagine the trauma that has already imprinted on her. We, her family, are attempting to fill in the gaps, but she lives with my sister still. Lives with this 'crazy woman' who now 'competes' with her more as a jealous sibling than her once adoring 'Gran'. And worse? We have all had to adopt a hyper-vigilant stance when the two of them are in the room together as my sister has become increasingly aggressive, both emotionally, and recently, physically. This is also a frightening situation in my home since, as I mentioned before, I have a rambunctious toddler underfoot!
I have spent hours online reading literature on WKS, searching for answers, trying to find resources, help, anything! I have learned much, but help? Nothing. My sister is in no way ready for residential care, and since we could not afford a 'nice' private home, I would not consider placing her anyway. Day care in my city? Exclusively for the elderly and handicapped, NOT for a young woman who has a cruel awareness of her illness, but no understanding of what has happened to her. I will NOT just 'dump' her somewhere, not even for a few hours, as so many of my well meaning friends and family (my husband's) advise. She would be terrified! Support groups? Again, devoted to Alzheimer caregivers taking care of aging parents. Already, in just three months time, this has proven to be the most isolating experience of my life.
I stumbled across this wesite, and though it is called agingcare.com, I have taken advantage of the 'Ask A New Question' box in hops that someone will read this and, just maybe, have an answer for me. I am desperate.
So overwhelming to have to deal with this in your sister at such a young age. However, if she has become physically aggressive especially toward the child, you should feel no guilt in finding placement for her. If she is a danger to herself or others, it is past time. Things can happen so quickly!
Are you in the US? If sister has no means of funding placement it is past time to go through the Medicaid process. This takes six months or longer and if there is physical aggressiveness this should have been done before. But, from what I understand, once she has become physically aggressive call 911 to transport her to the ER where they will admit her for a full psych examination. Once there, they can take care of finding appropriate placement for her which may be a psychiatric hospital. I know this will be very difficult, but you have the safety of others that should be a priority. It sounds as if this has already had significant psychological impact on the child and could effect her for the rest of her life.
I've been sick the last 10 days with a bronchial infection, migraines and just took me days to get rid of my fever. Mom doesn't comprehend that I'm sick I would cough and each time would have to remind her I'm sick. Its not her fault but so glad I'm starting to feel better. Then my brother came over today for 5 minutes on his way to a basketball game and questioning me about why i haven't done certain things this week. I reminded him i've bee n sick and caring for my mom and h e just shrugged his shoulders, if i had the strength i would have thrown something at him but lucky for him i was too far away from him.
I don't know what you've already researched, but a few things (from the norm of the elderly) occur to me:
- Look for support organizations for any or all of her conditions. For instance, some of the research organizations or foundations may be able to direct you to assisted living or even some research programs for medication trials
- Check for any local resources that handle the developmentally challenged for something like group homes
- Reach out to other families or group who are also going through this experience, they've surely preceded your research and may have some good answers for you
- If you're in the states, and your sis is already on medicare, be sure to see if she qualifies for your state's medicaid program. And don't forget SSI .. these are monetary resources, rather than in-home help, but every little bit helps.
A wee bit of googling got me to the NORD and GARD organizations which specialize in assistance to Rare Diseases/Disorders.
Hope that helps.
Meanwhile, Glad's concern for the child is well deserved, based on what I read about the syndrome. Is there a way to isolate the two of them? If not, the child should never be left alone with her, nor close enough, physically, to be at risk. I hope you find a safe solution .. no one wants Child Protective Services at your door, after an ER visit.
Hi Hollyq. Be careful with your sister and the grandchild. Your sister may become suddenly aggressive toward the child for some unknown "travesty" done against her. Even though I was age 23 when mom had dementia, to have her attack us with such hatred and anger scared me so much that I am now terrified of anyone who displays "mental illness". I automatically think that they will be like my mom - calm and blank to suddenly such hateful anger to wanting to hurt us. I'd keep an open communication with the grandchild to make sure you know what's going on in her head, the fears, the guilt (that grandma hates her, what did I do to grandma that she hates me, etc...)
And, my father's voice today is not irritating me. Whew!
I share others' concern for the grandchild, your great niece; and like you I'm afraid to think what she's going through. Because of her age and vulnerability, she has to come first in the overall plan. Your grandchildren have good parents, your husband has you; what's she got? Poor little moppet. Please seek expert advice on how best to support her, urgently: her school might be a good place to start.
Finally, I appreciate your consideration for your brother in law; but you ask "how can he be expected to stay in this now empty relationship at such a young age?" Well, because he took it on, for one thing. Because he IS young, for another, and has a fair chance of another chance once his commitment comes to its end. I'm not saying he should be held to anything against his own choice; but don't ENCOURAGE him to rat out! There is virtue in keeping to marital vows for their own sake, after all.
You are a good person, giving so much love and care to so many people. May you be rewarded with all of the support you need.
When it comes to visiting spirits of the deceased, we all have different belief systems. Our narcissistic aunt died in mom's home, (where she'd lived),
and actually in the bedroom they shared. This has been 2 yrs., ago. Initially, I really got the feeling her energies were still around, and how can they not be, especially being such a negative person. If you want, you can burn some sage, and Veronica has given you some very good advice about the matter.
Much Love & Light! Margeaux
When we arrived, I went into the house, looked at the pictures that were still out, went into the bedroom and looked over her dresser, opened a few trinket boxes on the dresser top, straightened a table skirt in the corner arranged her doll and bible. Told her out loud how much I missed and loved her.
Meanwhile, in their living room there's still a stand alone a "coat closet". It wasn't cold and we didn't have jackets. While still in the bedroom, I looked up at her graduation picture and asked if it was ok that we stay in her bed one night. The reason for being there and to give me a signal in someway if she didn't mind.
Forgot about everything that happened in the room, walked into the living room, my bil hadn't come home for lunch yet, my husband was standing by the closet and I hadn't noticed, but the door was standing open.
Husb asked "did you open this door?" I didn't open it, were you looking for something,"
Inside, I smiled to my sister in law and thanked her by God's grace to be able to contact her and letting me know"
I'VE NEVER TOLD MY HUSB about the incident and never will. That was her and my own way of connecting.
It didn't scare me, things like that just don't.
My mother having died a short 16 mos. ago contacts me through whistling very softly. Only when I'm alone They're very audible whistles, that's how I know it's her.
I am 1/4 Am Indian, 1/4 Hispanic and 1/2 French, my ethnic blood gives me the opportunity to tap into the lives of passed relatives. This doesn't happened with friends. I'm not off my rocker, these things have happened to me but only my youngest, who's also had similar things happen to her....truly understands.
Hi LJJ, welcome to AC. It's good that you know your strengths and limits. And I'm so glad that you found a very nice facility and it's close to where you live. As for your mom, just take it one day at a time. At nights when you're worrying, just close your eyes and pray with your heart to God to watch over your mom. (If you don't believe in God, maybe an equivalent?) Just take it one day at a time...
A move will often cause a decline, sometimes it is not reversed, other times it is. I think taking them out of a place they have been for a long time will leave them completely disoriented. But, the decline will happen in time regardless of where they are. My mom has lived in her home for more than 50 years, but often does not recognize it as hers, or will ask who has been living here while I have been gone. Just a couple of days ago, she looked at herself in the mirror and did not recognize herself, asked when her hair turned white. She has had white hair for about 40 years. She often refers to my siblings, that live in the area, but are not around much at all, as the other ones. She forgets their names, but thus far, usually recognizes them. And on recognizing them mom does not seem to understand by looking at any of us how old we are, all in our 50's, she thinks we are still teenagers. It is a truly devastating disease for all family members.
Right after Stu died, a few weeks later... I had a dream.... makes my heart hurt just thinking about it.... he was telling me I was beautiful, and I knew what he meant..... not 'outside' beautiful.... but inside.... it was bittersweet, that dream.... I am missing him so much right now.... can't catch my breath sometimes.... and he was an awesome friend....I am angry that I did not get more time with him....
I absolutely believe the spirits let us know things.... I was out rock hunting one day, my version of 'going to church', and was 'talking to Stu'.... and I came across this rock that let me know he was ok, whether I was or not.... just an odd shaped rock, but down in one section there was four little heart shaped sparkly things, then a ring around it.... and fissures coming out from it like sun rays... hard to describe.... but I just stood there and cried..... missing him more and more every day....
I completely second the motion about "coping, and nit-picking semantics!
Thanx,
Much Love & Light! Margeaux