I am the youngest only girl with 6 older brothers, married with no children and a home in Lake Forest, CA. I retired 4 yrs ago and ever since been caring for my Mom in her apartment 24/7, except occasionally 2 brothers come give me a break for 5-7 days. My Mom was a fantastic Mom (my best friend) and if I had to grade her, she would get an A+ hands down. She never worked and never had to drive. My Dad was an alcoholic and died at 72, 29 yrs ago and it was a big relief for her and she loved being independent. Life for Mom has always been her children and grandchildren, however the past year has changed her to someone I don’t recognize. She just started experiencing short term memory, but insists she was never told about something or never saw a certain show on TV. She is ready to verbally fight anyone who would disagree with her and if we even hint she is wrong she will say we think she is stupid and don’t really love her. She is always angry, critical of her family & others, judgmental and quick to anger. She has never cursed a word that I have heard nor so mad she will throw something, but she does now. In the past 6 mo. she has fallen twice, but never broke a bone and had such bad constipation she ended up in the hospital for 2 days (has always had stomach issues) then she had a tooth extracted 5 days ago and seemed to be getting better but today she said it hurts more than ever. She does have very low pain tolerance so it is hard for me to know just how bad it is or any pain she complains about. She has been on some type of antidepressants since she was 35yrs. and decided she would no longer take them about a month ago. She has lost a lot of weight doesn’t want to eat much (never has eaten much anyway) and refuses drinking protein drinks anymore. She worries and is afraid of everything, My issue is that I am starting to feel helpless, my marriage is suffering after 25 years together, and not sure how much longer I can actually help her and keep my marriage together anymore. I am a Christian and want to do the right thing by my Mom and husband going forward. I wonder if placing her in a care facility would be best for both of us or just continue to help as much as I can and basically watch her die. Does anyone have a suggestion for me?
In the last two years, she fell more often, insisted to go to the bathroom even though she’s incontinent and I clean her up 3 times a day, every day. Recently been hospitalized 2 times, for UTI, again for syncope/AFIB. My sibling, a brother from another state came for a week to visit and balked at what I go through every day (falling, feeding, incontinence, 24-hour watch as she gets up at 2AM). He basically left all aspects of her care to me. Aside from her, I also have a child with special needs. Stress in our home also affected my daughter, who has turned very bitter against family and became a college dropout. I'll be 25 years married next year, but with loads of problems. There are contractors doing a lot of repairs in our house I've to deal with. So as a Christian myself, I consulted with my Christian cousin who's a nurse, and she gave me her blessings. I had put this decision off for as long as I could and I finally decided to place her in a nursing home and hope for the best, for all of us.
Sorry for rambling, I just wanted to show you that there comes a time when the situation forces you to act, specially if you are trying to hold up everything by yourself. You're fortunate to have a good relationship with your mother and your brothers help you. That counts for a lot. Because of this, it IS possible that you can manage to take care of your mother at home, but you will need, as other posters have said, a LOT of help. Now is the time to gather members of your team: your brothers, her doctors, social worker, therapists, and even a lawyer and most of all home health care aides who will help you with aspects of her care. This is going to be difficult, because your mother will refuse every effort to help her. My mother hated aides as well, even the therapists that would come help her move and would be mean to them. When we were children our parents were in charge, but now you are in charge of their life and this role reversal takes a lot of getting used to, but just needs to happen, for their health and safety. It is just important to remember that you please, please don’t go through caregiving alone. I have come so close to killing myself---I couldn’t see any way out. What stopped me is the thought that for now, since I'm going at it alone, any decision I made would have to be good enough. I want to have my own life back and though I’ve lost all confidence in my abilities, having been fired a few years ago for poor performance, I want to go back to work. I have done all that I can with her at home, but as she gets cared for in the nursing home, I'm still going to fiercely advocate for her. In we end just have to do our best and adjust as the situation needs it. Heartfelt hugs to all the caregivers in this forum, I hope they will find find some peace, rest, and for their loved ones, prayers for help for their physical and mental suffering.
Write the doctor an email or letter about what you have observed, when the changes started, that she is not eating properly, and that she stopped her antidepressant a month ago. This might also be why she is having pain, antidepressants also manage pain. (Remember that, you might need to call it her pain medication if the doctor restarts it.)
Tell the doctor that you have reached your limit physically, emotionally and skill wise. The doctor might get Hospice care, nurses that come to her house and check her weekly I think. My dad had congestive heart disease, vascular dementia, was 94, and was on Hospice longer than 6 months because of the chronic nature of these conditions.
She might have an infection from the extraction.
My dad was picky about food and hydration. He loved Activia yogurt, which helped his gut and Gatorade because of the colors. He also loved ice cream.
Dont expect to hear back from the doctor until your mom has signed a specific release of information. You can sit in with her if she agrees, which I advise.
Gold luck
Your mother sounds like an incredible woman. How fortunate you are to be the daughter of an A+ rated parent. And to still consider her your best friend. Right there you are in a better starting place than many on this forum who are caring for really difficult parents.
Seeing that Mom is 99, doing the math reveals you aren't necessarily a youngster yourself. That makes it even more important for you to give your needs some priority. I have four suggestions for you:
1. Considering the drastic personality change I suggest a full medical check up. A UTI can do unbelievable things to a person's mental state. And various forms of dementia can do the same thing, so a neurological exam should be in order as well.
You may never know why she pulled herself off anti-depressants but those meds helped her through nearly her whole life, since age 35 or so. Start back up on them!!! Even if you have to somehow hide them in her food or maybe not explain exactly what they are. As a Christain and an all-around decent human being you may find it very hard to lie to your Mom or mis-lead her. But those of us on this forum know that a "therapeutic fib" is in the best interest of the patient and will not do any harm.
2. Once the immediate health evaluation is taken care of you should take steps to get all the proper legal things arranged (POA, health proxy etc) Hopefully that is already in place.
3. Then hire caregivers to come in regularly and often! A 3 or 4 hour visit every day can take a huge load off your shoulders. They can do some of the tougher things, like bathing and dressing. They may even be able to encourage her to eat more.
4. Finally, YES, it is time for you to start looking at facilities to place her in. She needs to be cared for and those needs will only increase. Your marriage needs to be cared for. And most of all, YOU need to be cared for. If you get burned out, you can't help Mom adequately and may even start resenting this woman who has been your best friend and an A+ mother. You deserve to have a fulfilled life. And if your Mom were in her right mind she would want you to have that.
So don't feel guilty about placing her. That is in her best interest in the long run. Visit regularly and nurture the "best friend" part of your relationship with Mom. Then go home and nurture the relationship with your husband.
I wish you the best of luck.
As for the "when" to move to other caregiving options, I usually like to ask questions that lead you to your own answer.
1 - Can you physically do all the tasks of caregiving or has something become more or "too" difficult to accomplish?
2 - Does everybody, except your mom, in the house have enough "time off" to care for themselves and other relationships? This includes 7-9 hours of sleep every day, 3 healthy meals at a reasonable pace, time to complete their own hygiene and medical needs, time off to nurture marriage (daily), friendships (at least weekly), and other relationships (monthly to weekly).
3 - Are you having "time off" just for fun?
4 - Do you have family, friends, members of faith community, and/or paid help that will step in to help if you are sick or injured?
If any of these answers are "no," then it is probably time to seek another living/caregiver situation for your loved one. Being a Christian adult child of an ailing older parent means making sure they get the care and treatment he or she needs. It doesn't mean using all your money to accomplish this or taking care of him or her personally.
Thank you.
I cared for my parents both for them and for me- not for my siblings. There was a time when I wanted to be “thanked” by my siblings, and then I realized that they weren’t appreciative of my caretaking in the first place so any expressed gratitude would have been disingenuous.
Should you/shouldn’t you change your mom’s caretaking situation? Only you can answer that based on your needs and abilities and her needs and abilities. If you are asking this community for permission to make a change, give yourself that permission instead. If you are asking this community to answer whether you can do it yourself, know that you can do it yourself, or yourself with help in a myriad of combinations, and if you choose any of those courses, or a different one, you will be fine too.
The most important thing is for you to choose what is right for you and your mom (not what is or what was right for us). Don’t look at this as a lose-lose choice. Try instead to look at it as win-win. Either way you have a super mom. Either way you will continue to be a presence in her life and she in yours, for as long as possible.
As for your marriage, I believe that a “perfect” caring partner is understanding and even helpful when caring for a parent in-law. That being said, no one is perfect. If your husband is being difficult, you need to decide whether his behavior is rational and acceptable to you. Does he need more attention from you? Probably. Could he pitch in? Likely. This is his chance to be a superhero (if he accepts the challenge). Of course, he could still be a really great guy even if he doesn’t morph into a superhero when you need one. You shouldn’t have to choose, though, between your mom and him. No one should put that kind of pressure or ultimatum on you while you are already hurting and grieving changes in your mother’s capacity. If he doesn’t help you, it would be nice if he could at least intangibly support your choices.
The antidepressant is one key to improving her situation. It takes 30 days to realize a change in mental health medication which aligns perfectly with your fact pattern of problems. It sounds like your mom should see a geriatric psychiatrist (if possible) to restart or tweak her meds to meet her needs.
Growing old is depressing to the best of us and she may need extra help because she is going through changes and loss. (Capacity, abilities, freedom, control).
Regardless of your choices, it sounds like you need a break. (Can you take a vacation to assess your options). Caretaking causes burnout.
It is hard enough when everything is going well, but when a loved one is struggling, everything hurts and life begins to feel hopeless.
Everything will be okay regardless of the parh you choose.
I wish you the best and understand your pain.
It's time for one of them to take care of her.
and serve home grown food..yes they have a garden...somewhere here in VA...also some very fine homes have appeared here Anthology, The Blake, you need I suspect LTH...all this depends of course if you have all your ducks in order....POA, home ownership,and elder law attorney...perhaps....Dad gave over his pension social security he was a Vet..was on A&A..1800 per month.....the facility accepted both full pay and Medicaid provided they have beds...really a huge decision...thankgod i was able to visit everyday...still could not get some info. also they do not feed and dad had semi dementia although when he heard my voice he was alert .....bravo dad!!!!!He loved the smoothies that i would just go and get fresh at the closeby Grocery store and his blender in his room..i just stored the Yogurt that i blended the fresh fruit with and anything else....wheatgerm...cereal its the best way to get all your vitamins...truly...only maybe toomuch sugar but what the heck..most of those seniors cannot CHEW..
you cannot dowhat they do in the senior hotels...transfers,bathing,changing,meds,its impossible unless yo have 2 people at least...or a catheter...then its UTI time..
You said she had taken antidepressants for 35 year and just stopped about a month ago. There's your problem. After so long taking it can't be just stopped. Talk to her doctor and see what medication options are there.
Hang on there !
really....but the problem here is age,cognition,self ability....which is zero...at that age...dad died after he got infected???after four 1/2 mos. with all the work that i did it would have been better not easier to keep him home.....but his caretaker died my brother with him as he was beginnning to get sick..dad died at 99yrs old
there is some truth that an overstressed caretaker can and will die before his patient my dad...wow!
Actually, it's a good thing your mom wanted to get off antidepressants only check with Dr and maybe she should get off a little at a time instead of cold turkey if that's what she did. Like start with taking 1/2 rx every day then every other day. Talk with her Dr about it.
As far as not eating or drinking much, that's norma at that age.
As far as constipation, she needs to drink lots of liquids and have her drink apple juice and prune juice every day to help with constipation. If she doesn't like prune juice have her eat a few dried prunes every day which taste good and have her eat oatmeal and sift oatmeal breakfast bars with fruit inside.
Donto worry about correcting your mom about little things that don't matter. Would you rather be happy or right?
The older one gets they start forgetting things, even at your age.
Deventually changes us but go with the flo. Stop nit picking about telling her she's seen a movie if she says she hasn't. Who cares and what difference dies it make? If she doesn't remember seeing it and thinks she hasn't , then she hasn't as far as she's concerned and it's absolutely useless to try to convince her she has. And why should you anyway?
The best solution is to have one of your brother's to install a few cameras in her home to be able to keep an eye on her. I had my son install Nest Cameras at my 95 yr old Dad's house so I could check in 24 7 anytime from my cell phone or lap top. He lives in his own home and has 24 7 Caregivers.
Your mom will feel more love, feel safer and will be much happier NOT IN A Nursing Home.
1) Have her evaluated by her PC doctor, medicine review, blood work
2) Mom should be eligible for bathing help 2x a week through medicare
3) I would try getting help for her at first and see how this works
4) meals on wheels?
Your health will suffer if you continue 24/7 care. Take care of yourself.
Maybe Medicaid, but I don't think Medicare.
I agree that Poster will suffer if she tries to keep this up alone.
You cannot provide the care she needs. Putting her in a care facility is the right thing to do. You would feel a hundred times worse if she was allowed to stay home and got hurt because her pride was put before her safety and welfare.
Put her in a care facility.
Please ask your brothers for more help and go on good vacations with your husband when they come to take over. Most of the information you have provided tells me that you have strong family ties, resources, positive relationships with your siblings and you all love your mother very much. It’s almost over. You’ll feel so much better if you and your brothers decide together to indeed keep her at home as long as possible and “watch her die.” The alternative is a forced institutional care placement that will cause your mother to feel betrayed and extremely hostile, pulling at your heart strings every day she remains alive. The chances of your mother living much beyond 100 are nil. Her eating pattern tells me she could go downhill and be gone before you know it.
After 9 months, I was losing every possible chance to remain healthy and sane. Tears streaming down my cheeks, I took her to the residence where she’d received her Medicare rehab, before coming home to me.
That day was the first of 5 1/2 of THE BEST YEARS she’d lived since my wonderful dad had died.
She was dearly loved, and loved all by whom she was cared. I saw her join sing alongs, chat with others, and do many things she enjoyed that she hadn’t done for years.
I was there every single day for her, and her wonderful sisters went every day at noon. I was still exhausted, but became more and more confident that it was so much better for her that I’d done the right thing. She died at 95.
For me, Trying to care for her in my home would have been overwhelming if I’d done it for 3 more days, much less 5 1/2 years.
Seek out the VERY BEST you can find in residential care “just in case” - it will be good for YOU to find out what’s available.
You have had a long marriage. Congratulations on your 25th wedding anniversary! Cherish your life with your husband. He has stood by you, but is understandably growing tired of this situation. Marriages do take a hit in these circumstances. Please don’t risk destroying your relationship with your husband. Both of you deserve a happy life together.
You don’t have substantial help with caring for your mom. Your brothers have only helped out a small fraction of the time. You need more help. One person cannot do everything required to take care of a 99 year old woman. Have you considered placing your mom in a facility? Have you contacted Council on Aging or a social worker to help guide you through the process of planning future care for your mom? That would be a great place to start. They can do an assessment of her needs, and give suggestions in regards to the care that is needed at this time.
Caregiving never becomes easier as time goes by. It only increases. As your stress level rises, so will your husband’s stress level rise right along beside you. I don’t think that you want to put your marriage in jeopardy. You most likely feel caught in the middle of your mom and your husband. Make the decision to put your husband first. The rest will fall into place.
Your dedication to your mom is admirable. You haven’t let her down. Please know that you have done all that you can and let go of the idea that you can do everything. You can’t.
What do you really want? I will assume that the answer is, having the best possible care for your mom. You can attain this by allowing a professional staff, doctors, nurses, aides, social workers and clergy to help her in her final days on this earth. This exists in a facility or an ‘end of life’ hospice house. You will still be involved in her life as her daughter and advocate.
I wish you peace as you navigate your way through this difficult time in your life.
Having complete labs would not hurt. There could be something physical going on.
Then I will say that your husband and your marriage MUST be your number one priority. If that means that you hire some full-time help(with moms money) to come in to care for mom 24/7, or you place her in the appropriate facility where she will receive the 24/7 care she needs, either one would be appropriate at this stage.
By allowing others to care for her, you can then get back to just being her daughter, and enjoy whatever time you have left with her.
Your mother would never want you losing your marriage because of having to care for her, so it's now time to make some much needed changes. Best wishes.
From what you have described I would think Memory Care would be an option but if she has not been diagnosed with dementia that might be difficult.
If she is cognizant she can refuse to go to Assisted Living or Memory Care. This is why a diagnosis is important. If you do not have POA then you would have to get Guardianship if she is not cognizant.
Your focus should be on your husband and your life with him not on your mom.
(and if you had discussed this with her years ago I am sure she would not have wanted you splitting your life between her and your husband.)
There are 2 or maybe 3 options.
Find a caregiver or caregivers for mom so she can remain in her apartment safely.
Move your mom to an Assisted Living (or Memory Care if appropriate) where she will be safe / safer and cared for 24/7/365
Move mom in with you and your husband (or find a place that will accommodate her as she declines if your house is not accessible. (this 3rd option is not ideal if you read the many posts that are on this site.)
If you are doing the majority of caregiving and brothers spelling you for a bit once in a while you should have more to say than they if you discuss this with them.
I also hope that you are paying yourself from moms funds for the work you are doing.