We have been caring for MIL at home for the past 6 years who needs around the clock care because of dementia. We have managed to share responsibilities with other siblings/ caregivers but most of the responsibility falls on us as I am married to a middle child who was very close to his mother. LOVE THE MAN! We are in our mid 30's and lower 40's. and still building a family. We have infertility issues that have not been addressed because of all the time this illness has taken from us. Finally husband and I are getting treatment and will be soon starting a family . THANK GOD! We cant afford to stop working so I am a little concern about the future, our relationship, bringing a baby to the world in this situation.
We have so much in our plate but at the same time I am getting older and dr. advise my egg count is very low so we need to hurry up. This puts more pressure. Putting her in a home is not an option . There are times he goes into her house for 2 weeks because the other siblings cant cover. This of course brings a lot of stress.
What I would like to know is the following:
1. Has anyone try to raise a family, work and care for a dementia patient at the same time? How? Results?
2. How long can we expect her to be around? Is it bad that I even think about this? Feeling guilty.
She has been wearing diapers for the past 2 yrs and needs everything done for her. During the night she will not sleep and will talk nonstop which is making caring for her very difficult. Sometimes she does not want to eat and is losing mobility.
-No other health conditions
3. How can we manage her sleep pattern better without increasing medication and what are the consequences ?
4. How do you reduce her having to pee so much at night? We put a tick pad inside diaper, she will still wet the bed and then take diaper off and pee more and sometimes the #2
5. How do you keep your sanity?
6. How do you set healthy boundries and admit your limitations?
This illness is the worst. I married the love of my life at age 27 and for the past 8 yrs have supported him through his mom's illness but I also belive he needs a family for when she is gone and don't want us to lose that opportunity and fall into bitterness later. Will appreciate your advice.
She has lived her life, you need to live too and have your family. You are lucky to have siblings. Get them to work!
Best of luck...🙏🙏🙏
It sounds like your hubby works remotely to be able to stay 2 weeks at a time. Do any of the other siblings also work remotely? For those who don't, they could fill in for their days off, like from Fri evening to Sunday evening.
You say "There's no one perfect solution but getting more family involved or paid care could help."
I will agree that there really is no one perfect solution, but we have to weigh those options we DO have and try to select the best of the choices, for everyone involved.
Family help:
As for getting more family involved - AHAHAHAHAHAHA, sure... There are NUMEROUS threads and comments in this forum regarding this topic. While there are a few bright spots, comments from siblings who work together, most of the comments and questions are from those who DON'T get help or support, even when they ask or beg for help. Asking my brothers for help only frustrated and angered me with their lack of support or even understanding. OB just yelled at me to "give it up." Oh, that was useful help from family, eh? The other brother...let's not go there. I will only say that at this point I need him to take mom to 1 appt, 4x/yr, as it is outside the transport area, no other options and I can't support her weight. He doesn't visit, does nothing to help me and tries to get out of these appts! Once she passes on, he will join OB as persona non grata. OB has been there over 2 years and I want nothing to do with this abuser (another reason for not letting him care for mom, like he even could - he couldn't even tolerate a short visit with her the last time he was here!!!) I have no spouse to help and would NOT ask my kids - they have their own lives and issues.
I for one can say WITHOUT hesitation that I knew I would not be able to care for my mother in my home (many reasons, esp access to get in/out and being physically unable to support her weight, but also very small bathrooms that are too small to handicap and renovations being on hold mid-way for several years now. It would NOT be a safe place for her.)
Bringing in help:
Despite trying to introduce aides (1hr M-F) to get her used to them so we could increase the time as needed so she could stay in her own condo, that fell flat in less than 2 months. She refused to let them in. Her place was about 1.5 hr from me, OB lives 2 days away and YB is still working, so it isn't like any of us is near enough to respond quickly to issues or provide daily assistance. NEITHER brother would be a good caregiver, esp OB (I could write a book about those 2.)
So, don't assume that we who advocate for finding a safe place for someone means we are callous. In this person's case, it does sound like it might be the only real solution - trying to live a life, work full-time, start a family and having to spend 2 weeks at a time, often lacking sleep is a recipe for disaster. Sometimes the best we can do is find a GOOD place for them, and then become the child again, advocating for the parent, visiting often, watching over them without the stress-inducing need to provide all the hands-on care. Moving someone to a GOOD (ignore the "STARS" reviews, check them out yourself!) facility and providing all the non-hands-on care and visits will reduce stress and free us up to spend QUALITY time with a LO rather than digging ourselves an early grave.
I think in this case, if the MIL is truly stage 7, there really isn't a way to "get into her head" or reality. That suggestion works often to help when the LO gets stuck on anxiety about a family member or has some delusions. Once they get to this stage, there isn't much reality left.
My first suggestion for the night time issue is get her tested for UTI - preferably the urine culture, not just the dip stick test. When I joined this forum, reading suggestions to test for UTI seemed odd... until it happened to mom. She had UTIs often over the years, but the first one after moving to MC resulted in some SERIOUS sun-downing! However, the next 2 showed up as night time bed wetting. She wears disposable panties and has pads inserted at night. She would SOAK herself, the bed, her nightgown, etc. This shows up as extra laundry charges (14 one month! how does a woman in a wheelchair generate that much extra laundry? Bed wetting due to UTI.) Once treated, the wetting stops.
For you, having a family can't wait too much longer so you will need to focus on that. You will also need to be supportive of your husband as he helps mom. You did state that you have support of family and caregivers.... You just may need to pass more of the support their way at certain times. It also sounds like mil doesn't live in your house, so at least that is not an issue. You should support your husband as he cares for his mom.
#1 Luckily my children were adults when I was caring for my mom, but I did homeschool a grandson during that time. I was lucky that my boss allowed me to work almost entirely from home...on my own schedule. I didn't have any physical help from siblings, just my husband and occasionally my children. It was very rewarding...I was blessed to be holding my mom's hand as she took her last breath.
#2 Your mil doesn't sound like she is stage 7 yet. When my mom got to stage 7, no longer talking or walking, has to be hand fed, she still lived 3 years.... 2years on hospice.
#3 Sleep is tough. I tried some of the things others suggested. Keeping her up more during the day, limiting sugar and drinks later in day, setting a schedule.... I didn't want to use meds. Many nights we were up... It is a big part of the disease. Sorry, one of the things that make it the worst on those of us caring for them.
#4 It is best to limit lemonade, tea, coffee, soda. Also looking water close to bedtime. I also invested in more expensive overnight disposable briefs.
#5 Sanity? I am not sure if we keep our sanity ;-) For me, I was luck to have my children and grandchildren around ...for you, with a (hopefully) new baby? Well, you will need to not be doing as much of the care, and you need to be sure that you have help when your husband is taking time to help his mom... But he will need to find a balance too. You will need his support with baby and you will need to support him to care for his mom....balancing act!
#6 This is the tough question. Give yourself a break... You can't be everything for everyone.... And neither can your husband. Stop and think, if you were your mil, what would you feel was fair? How would you want to be cared for? If your parent were in this position, what kind of support would you want from your husband?
Finally, just love your husband and support each other. Much luck
I do think that, should money be the problem, you should investigate Medicaid. Medicaid is wonderful. Give it a try. If it's because her son, your husband, can't seem to let go, I suggest he visit a couple of N.H. to get a better feel of those kind of places. They are not ALL bad. Start looking into them because, with dementia and disability as your MIL has, things will not get better. You need to keep your sanity and concentrate on your future together.
While in a nursing home or whatever, Mom will get 24 hour care divided among three people. She will be changed often; will be bathe easily with apparatus that you don't have at home; will be fed, if necessary; will have her clothes washed and cleaned. Then there will come a time where Mom, eventually, will not know who you are. But, believe me, I've been there, she will be taken care of so much better than what you can do at home. No matter how much "help" you get.
There are 10 stages of dementia....specifically Alzheimer. Each stage progresses at different speeds for everyone and also different phases cross over to other phases. My mother is in her last stage, however, she can still talk and carry on somewhat of a conversation. There is no telling how long a stage lasts.
And, no.....you are not a bad person to wonder when your MIL will pass on. Anyone who takes care of a relative with dementia wonders the same thing.
I wish you peace and I hope you find a place for your MIL soon so that you can get on with your life and future.
If Mom can afford in home care, at least for a few days a week, that would help a lot. I certainly hope that either you or your husband have POA for healthcare and monetary concerns. Peace be yours and soon.
Can you elaborate on this? Is it a financial issue or family preference?
If it's family, is it all the siblings or just your husband? The toll for 6 years of sharing care (with the bulk landing on him and you) is hard enough, but as this progresses, the stress and strain will only get worse. In answer to your 2nd query - there's no real time line. It varies depending on the underlying health of the person and what type of dementia. Some progress faster, some take much longer. If she is relatively healthy, she could live many more years, becoming more and more dependent and lose mobility. This will take an even bigger toll. Even with sibling help, this is a major undertaking and can impact ALL facets of your lives.
Some promise not to place a parent. Some still think these places are awful. The promises can't always be kept forever and sometimes it reaches a point when it is better to use a facility. Guilt? It happens, but when one can spend time LOVING the parent instead of cleaning up after them, it is better for all! Do take time to visit, when it can be done, places. Mom's place is very nice and I wouldn't object to living there if needed!
If it's financial, there are often ways to mitigate. If someone has POA, her house could be sold and the proceeds used to fund a facility. It would be wise to consult with an EC atty, to know what can and can't be done, what financial restrictions there might be, what options are available.
If in the end either preference or finances preclude a facility, you can hire CNAs to cover care during overnights and other times. It is more expensive for full-time care than a facility, but is an option to provide some relief for those caring.
For your questions:
1. This is difficult at best. Having to tend to emergencies, lack of sleep, etc can take a toll on one's health and could impact employment. Raising a family is stressful in itself, at times, and having to juggle that with full time care for someone else is going to be taxing for everyone!
2. Medical professionals might be able to guess, but there's really no way to know.
3. This should be done with medical advice - doesn't mean medication all the time, but they may have ideas. Sometimes a mild dose can do wonders but not impact much else. I'm not a fan of medications, but the anti-anxiety did help get us through the 1st UTI/sun-downing. It also relaxed her enough that she would go to bed at a normal time, but she wasn't "doped" up.
4. Have urine culture done. Mom's 1st UTI at MC showed up as sun-downing (behavioral), but the last 2 resulted in night time bed wetting. She wears briefs and has a pad insert, but would SOAK everything. Once treated, no soaking!
5. Who says we do??? ;-)
6. At the stage she's at, it's likely hard to set any boundaries. I think some deep conversations between you and your husband, maybe siblings, are in order to discuss and know when anyone has reached their limit. The fact that they are not contributing as much hints at perhaps it has become too much for them. What you describe sounds overwhelming to me (hubby.)
"This illness is the worst." - agreed. Bad enough that it is terminal, but to not know how long or what to expect...
While caring for his mother is important to this man in your life, and you do what you can to support him, I think he needs to really step back and see what this is doing to him and your relationship. While I can understand someone can love enough to want to be there to the end, it would be much better to have her under someone else's care, so that he can spend QUALITY time with her - loving on her, taking her out, if possible, advocating for her - in sum, being her loving son again instead of a care-taker. It relieves the stress of getting all that drudgery done and allows us to give our love as best we can to those who may not fully understand anymore. We know.
Well fast forward 25 years and she is now living in a very good facility due to dementia. My brother and I keep a close watch on her, window visits right now but the staff know we are being observant. She is clean, relatively healthy, and has her medical needs closely monitored.
There are many excellent SNF and AL options out there, staffed by caring nurses and aides. Sure, there will always be the bad eggs but we have found most to be good people. And 3-4 shifts in 24 hours means they are relatively well rested and can go home after a 6-8 hour shift. Can you say that about yourself? Especially with a new baby?
I admire anyone who is willing and able to take on the care of an adult with dementia. But it only took a few weeks of Mom living with me to recognize that I could not do it long term. It would not have been fair to me or my mother and potentially harmful to us both.
Good luck with whatever decision you choose, and best wishes on starting your new family.
My mom entered the "wandering at night" stage a few months ago. I give her 10-15 mg of melatonin at bedtime and that helps her get to sleep (sometimes I give her a rx of mertazimine 7.5mg too. It's keeping her asleep that's hard. I've started keeping her up an hour later (abt 11:00 pm) then giving her the sleep meds ith milk and calcium. (also keep daytime napping down to 1 or 2 naps of 1 hour or less).
Most nights, I get some sleep so far by following this. Its hard but you can make it better by finding what works for her.
Best of luck,
you are in our prayers as I know how hard and necessary it is to care for you mom.
Diana