Follow
Share

Got a call from mom's senior apartment complex manager Sept 2014, letting me know that over a half dozen tenants had come to her with concerns about my mom's cognitive abilities. My mother has always been a mean and vengeful person and had written my brother and I off all through out our lives so by this time it had been years since our last contact. I spoke with my brother and we decided to go make a home visit to see what was going on. Her place was disorganized which she said poltergeists were doing...that they were constantly moving her things around. The food in her fridge was rotten, dishes weren't done and you could tell that it had been ages since her shower had been used. She was pleasant. Seemed matter of fact stating that the neighbors and maintenance man were stealing from her when she wasn't home because she couldnt find things. Verbally, she seemed fine, able to carry on a normal conversation. I spoke with my husband and we decided to offer her a room in our home while we got her Medicaid and located an assisted living facility. We offered and she jumped on it. Hindsight-HUGE mistake! I should have called Senior services while she was still living in her apartment so that they would have to figure it out and find a solution for her. Senior Services said she didn't qualify for the Medicaid assisted living benefit. That kept her square in my lap, in my home. We were stuck. So, I put on my big girl panties and decided I was doing the right thing and would do my best for her. We added fifteen pounds to her frail 85 pound frame. We started to see the effects of dementia immediately. She accused us of stealing things which we would find exactly where she had placed them, she refused to shower, she was still driving and ended up lost and slept in a parking lot. She had creditors calling and was going to her bank almost every day withdrawing cash to go gamble(always had this addiction). At this time I called her doctor to see if we could get an evaluation done by a neurologist. Her primary care said she had to be seen by her first and that they would do a test in their office. Their test lasted 10 minutes and they said she was fine??During the visit she was concerned about chest sounds so referred to a pulmonologist and sent us to x-ray. The Pulmonologist said he could tell that she had dementia( his father had dementia and so he was very familiar with it) so spoke with me concerning her results which were severe emphysema in both lungs and a wallet sized mass in the upper lobe on her right lung(nsclc in his opinion), and said she was not a good candidate for treatment which I agreed with, as did she. Her primary care physician referred her to Hospice and we started that process in July 2015. Through Hospice we found medications that helped with the dementia(the aggression, spitting and hitting)with the goal being to help make her 'final days' happier. It was determined that she was early to moderate stage 3-4 dementia. As crazy as it may sound the dementia was the most troublesome of her symptoms for us. She was on hospice for 18 months when they decided to sign her off. The dementia over time worsened but her lung mass and emphysema seem to be stablizing. So now we are on our own with a referral back to the pulmonologist to get a clearer idea of what we are dealing with. In the almost two and a half years she has been here she has gone from stage 3 to 5/6. She no longer knows what day month season or year It is. She now tries to find ways to go home. No appetite but will eat 2 to 3 small meals or nutrition drinks offered to her. If you ask if she is hungry she will say no so we just give her the food. Her gait is unstable, she refuses to use a walker but will allow the wheelchair when we go out. In many ways in our situation the dementia appears to imitate multiple personality disorder. You just never know who you are going to have at any given time. The delusions are more frequent(no UTI). Even though I know I am doing the right thing by her, it is taking it's toll on me, my husband, my family. Oregon health plan will kick in for a memory care facility when she can no longer toilet herself and feed herself. Realistically, that is years down the road. I am sleep deprived, have gained fifty pounds since she moved in, ears ring incessantly, live in a fog with family very concerned. A positive..I have found out who my real friends are. Would I do it again? Sadly, NO!

This question has been closed for answers. Ask a New Question.
My parents live four houses down and have been a declining depressed mess for 6-7 years. They don't live with me, but had I known 15 years ago what I know now, I would never have encouraged them to purchase a home near me! They are a heavy weight around my neck. I cannot drive out of our subdivision without passing their house. They are self destructive and are not the people I grew up with. It's a real drag and likely to go on into the future for quite some time. I have two friends who moved mother/mother in law in to their homes within the past few years. One is in deep regret and marriage is just about shot. The other is in the early stages of this living arrangement and I think it's beginning to sink in that moving mom into the house was not such a great idea....Take care of you, you have the rest of your life in front of you!
Helpful Answer (12)
Report

Mamakp, I know it's become almost a cliché but yours really is the case that "no good deed goes unpunished." And it wasn't even doing the right thing by your mother that landed you in this, it was doing the responsible thing by her community! And that's the thanks you get for it - no help when you need it.

I'm so sorry it's turning out like this for you. To answer your question, I'm torn between 'no you must be joking' and 'yes but I'd do it all differently.' But overall we all need to have a fair trial run at it before deciding, and it's... Not Fair! :(
Helpful Answer (10)
Report

Would I do it again? Hmmm, I guess that depends a lot on when I am asked that question. For me, I am only two years in to my XX year sentence. Everything seems to have stabilized right now and I am managing everything pretty well. My husband is a little bitter about how much she has taken our freedom and I know this has impacted the kids but, right now...I guess I am OK with the decision.

But, if you had asked me about two months ago...NO WAY. We were in a particularly rough patch at the time.

Ask me again in a few months and who knows.

The one thing I wished I had done sooner was spend her money on her care. Initially, I was trying to do everything myself and only brought in a caregiver for the 24 hours a week I was working. But then I realized that I was safeguarding her money for what? So that my brothers could inherit what was left? Now, I have caregivers come in 55 hours a week (I work 40) and am willing to bring people in on weekends when there is something I want to do.

So, while I do not regret taking Mom in, I regret the time I spent trying to do it all myself.
Helpful Answer (18)
Report

Dear Mama,

I'm so sorry to hear what are you are going through. I know there is a lot on you. The burden and responsibility is overwhelming. Everything is always 20/20 in hindsight. I don't think any of us know what we are getting into till we are in the trenches. And even then we try so hard to keep our heads above water. Its so hard to find the right balance.

Please try to look for other options. Consider talking to a therapist, social worker, counselor, joining a support group or accessing resources through church or the community.

If we caregivers run ourselves into the ground, we are no good to ourselves or the people that depend on us.

I was my dad's caregiver. I tried and tried. And now that he has passed, I deeply regret the last year of his life. I let the resentment and anger affect my judgment and compassion. I never told my dad what I should have always thinking we would have another day, but we didn't. I know its hard right now, but I hope you can find the balance.

Thinking of you.
Helpful Answer (7)
Report

I'd like to say I'd do it all over again, and my heart says I would, but that's easy to do after the fact. I'm no longer in the trenches of caregiving, so it's easy for me to say I'd do it again. I remember very well the days that I was so frustrated with Mom that I'd go outside and just do some deep breathing for a while to calm down before I started screaming at her. (I never screamed at her, but oh, there were days.....). Mom had dementia, but it was not quite to the point where she didn't know what was going on - she was a master manipulator and would try to worm her way out of showering or bathing or doing anything that was for her benefit - those days I definitely don't miss. I do miss being able to ask her about relatives and family issues that I don't know about and now have no one to ask. I miss her stories about growing up. I miss the person she was before the dementia started to kick in, leaving her staring at me blankly, like she simply wasn't there behind those glazed eyes.
Helpful Answer (5)
Report

No, I would not do this again. I have Ma in my home where I live only 3 days per week. My sister has the other days but can always go home after making dinner. But having an elder parent in your home is tiring beyond belief and affects your relationship with your significant other even though you both recognize and do everything you can to work against this. My Ma was a wonderful mother and I didn't recall any bad stuff. But now I see she is a real (pardon my French) agent provocateur. She can't move without a walker but with a straight face said to me she is "not disabled." She will not go out of the house to take a car ride or anything (only when my sister takes her to the doctor). She is patronizing about what we read and watch on TV and often talks right through the news and other shows we watch before dinner. She is incredibly picky about the food we serve. I'm sure she doesn't mean it but every word out of her mouth sounds like a complaint. I'm thankful it's her legs that went instead of her brain but I can hardly relate to her anymore. Really, if there is another way, avoid taking your aging parents into your home.
Helpful Answer (8)
Report

I feel no guilt when I say I will not be living or letting my uncle stay with me.

When the time comes that he can't live in his house I will have caregivers stay with him. When that becomes unsafe he will have to go to an assistant living place.

For me it's not about loving him, it's about what's best for him and me. I'm not a caregiver.

Nicole
Helpful Answer (13)
Report

Would I have my mom move in with me if I had if to do over? No. I'm not sorry I tried and I'm sorry I failed, but I was with my mom 24/7 for over a year, did everything for her, and had no life of my own. Resentment was taking over my thoughts and I had no patience with her. I would wake up every morning saying I was going to do better and by 1 or 2 pm (when I was actually able to get a shower myself) was hating myself because I'd lost it again. She had three falls since mid January and the last one put her in the hospital and rehab. She will not be coming back to my home. It's tough when she looks at me with her doe eyes and asks when she's coming home, but I have to stay strong and tell myself this is best for her and me. She needs more care and stimulation than I can give her and I need a life of my own too. If I had continued on wifh her care I would have had a nervous breakdown or worse. I need to be healthy in mind and body to advocate for her while she gets the care she needs.
Helpful Answer (14)
Report

Yes I would. However, that said, my dad had a small pension and I have acreage so together we bought him a Mobile Home and put it in my front yard. He lived there very happily, on his own, with me assisting him and cooking for him. He had Early-onset Alzheimer's but was taking Aricept.
I miss him and his mobile home - but I got to really know my dad in those few years and I am thankful even for the days of, "my remote won't work anymore."
I was lucky - he was never violent or abusive during that time. He was extremely thankful.
Helpful Answer (12)
Report

That is a tough question. I moved in with my parents because they refused to leave their house and refused to let anyone come in to help. It left the kids with a big problem -- what to do about Mom and Dad. When my marriage fell apart, all problems were solved. Now 7.5 years later I am still here taking care of a mentally ill woman with dementia who is so disrespectful to me that I don't know how I keep doing it. Still she won't leave her house or let anyone come in, and there is the big question about what to do about Mom. She has spent the last 10 years dying every minute of every day, but she keeps going just the same. I didn't want to move in to start with and I still don't want to live here. I just don't know what else to do with her.
Helpful Answer (6)
Report

I am so thankful to read other caregivers responses about living with her elderly parent. Especially when I take him places and his doctors and other professionals ask me questions like, "Why don't you live with him?' I have been asked this question many times and then feel guilty that I am not living with him. So reading these posts help me cope with my decision.

I cared for both mom and dad for 4 years then after mom's death moved my dad into a smaller house about 8 miles from my apartment. Both of my parents were adamant about not going into a "nursing home". Even though I don't live with my dad, primarily because of reading posts like these, I spend a lot of time with him helping him at his house and driving him to appointments. I do have several health problems because of the stress of caring for an elderly parent even though I don't live with him.

I realize everybodys situation is different. But I would never advise people to move in or have their elderly parents move in with them and their families. It also makes me think about my future and how I want to live my last few years without putting stress on my children. I love my children too much to do this to them.
Helpful Answer (8)
Report

" I take him places and his doctors and other professionals ask me questions like, 'Why don't you live with him?' I have been asked this question many times..."

I'm wondering when I'm going to start being asked this question. (Of course, I've been informed by my mother that I will stay in the waiting room when she has her next doctor appt. next month, because she doesn't like them talking to me and not her.)

My mother can only see out of one eye, has horrible balance, and needs a walker for outside her house (and a cane inside it). She is going to be 91 in August. She lives alone (one-story condo).

She will NEVER live with me. I dare some doctor to suggest it!
Helpful Answer (6)
Report

Every person will have a different answer to this. I think the relationship you had/have with the parent has a lot to do with this. In my case, yes I would absolutely do it again. Neither brother was in a position to take her in when it became clear she could not maintain her home/lifestyle. We were very proactive and convinced her to sell her home and move in with me when the dementia first started rather than waiting til later. She was only 79 when I moved her in with me (divorced, living alone). She got lost on the way home from a doctor she had been going to for 30 years and her house was a disaster of a mess. I became POA and have watched the dementia get worse these last 4 years but I would not trade this time to get to know my mom as a person and not just as mom. Does it drive me wacky when she can't remember that we are leaving on vacation tomorrow? Yes. Is it a challenge? You betcha! But this woman gave me life, supported me, raised me, spanked me, cheered for me, but above all loved me more than life and I will be there for her in any way I can in her last years and for as long as the good Lord gives her.
Helpful Answer (3)
Report

Nope, in a word. When dad died back in 2003, we kids should have pushed mom to get into assisted living because she did need help, even back then, but she was very resistant and we felt she was still okay enough with some supervision. Things steadily worsened over the next few years; she totaled a car and had that replaced, when she truly should not have been driving (shame on us). I lived nearby and supervised at her house as best I could, took over the driving, lawnmowing and other chores at her request, etc., still worked a full-time second-shift but at-home job, and it was extremely stressful. She finally moved in with me at my insistence right after her cataract surgery a few years ago, fighting all the way on a daily basis (hygiene, etc.). She is in memory care since January this year after a week's stay in the hospital with pneumonia, and placing her has been a blessing, no regrets on my part, and it's working out well. I have to admit that I will probably always harbor a bit of anger with mom, despite the Alzheimer's, for pushing all decision making onto her kids. I will not do that to my nieces and nephew.
Helpful Answer (6)
Report

Mamacamp,
Are you in a state that requires you to provide for the support of a parent? I wouldn't think that you are required by law to do that. I'd check with an Elder Law attorney. If your mom is not able to care for herself, she may be considered disabled and thus eligible for care benefits that most seniors are not who are of sound mind. I'd explore the options and perhaps question the info that you were provided. It sounds like you have done your part and need a change.
Helpful Answer (0)
Report

Yes. Despite everything, yes. That said, my mother was not a narssissis (how many esses in that, anyway), never hit or spoke abusively. In that case, I would do things differently, including treatment for those unhealthy mental illnesses.
Helpful Answer (0)
Report

I would say yes; most likely because every thing worked out. Mom lived with me for 2 years. She moved into a memory care unit this past August and I am very happy with the facility. If this scenario didn't work out; I probably would say no. During the time she lived with me; she went to adult day care. It took about a year to get her placed in the facility I wanted; and honestly, I don't think I could have gone much longer.

Best option: If I could do go back in time - have mom invest in a long term care insurance plan that would help pay for assisted living. Then she could have moved there first. Caring for a person with dementia is never easy. The stress took its toll on my health.
Helpful Answer (1)
Report

Wow! Each and everyone so hard on themselves for making a loving and caring decision initially. Sad to say but caregiving will do this to you, making you question why you took the role on, what were you thinking? With Alzheimer's and most memory impairments we seem to forget that there will be changes in our loved one due to the progression of the disease and the areas of the brain affected. Behavior and personality changes will occur. One day/moment may be good or bad, yet never the same. Your loved one at any given time may be compliant or a tyrant. What worked once, may not work the next time. I feel we all need to give ourselves a pat on the back for making the decisions we did and accept that's it's only normal to question why, especially when things get tougher for us. Know when it's time to change course if needed. Choices and decisions can be changed, trust yourself. Remember to take care of you as well. God Bless
Helpful Answer (4)
Report

Wow! Each and everyone so hard on themselves for making a loving and caring decision initially. Sad to say but caregiving will do this to you, making you question why you took the role on, what were you thinking? With Alzheimer's and most memory impairments we seem to forget that there will be changes in our loved one due to the progression of the disease and the areas of the brain affected. Behavior and personality changes will occur. One day/moment may be good or bad, yet never the same. Your loved one at any given time may be compliant or a tyrant. What worked once, may not work the next time. I feel we all need to give ourselves a pat on the back for making the decisions we did and accept that's it's only normal to question why, especially when things get tougher for us. Know when it's time to change course if needed. Choices and decisions can be changed, trust yourself. Remember to take care of you as well. God Bless
Helpful Answer (0)
Report

Jkling, you've really had docs and other professionals ask you that? Seriously? OMG, I can't believe it! Next time ask them how long they've had their parents living in their homes.... and whether they would consider doing that on your income ('cause having enough resources for 24/7 hired help and a separate granny suite doesn't count).
Helpful Answer (1)
Report

Would I do it all over again? My mom I would. I would have cared for her forever. Would I agree to take in my grandma? I don't know. It's easy to say no because it's taken over my life. I have no job, no husband, never get out, have no friends and honestly no life. It's my whole existence because there's always sickness, hospital visits, doctor visits, and other things going on not to mention the daily routine of getting her up after multiple bathroom breaks throughout the night, convincing her to go the bathroom then take her pills and not chew them or hold them in her mouth, then we do breakfast, she gets a shot from me for her diabetes. Then I breathe for a second before she gets a shower, gets dressed, takes more pills, has a morning snack. Then I breathe again for just a second so then I can do another bathroom break, then more pills, lunch, nap if I'm real lucky, snack, cook dinner, feed her and give her more pills. Get her ready for bed. I do get a 3 hour break in the morning but I'm spending on getting her pils again, picking up pills and setting them up, then getting food. then the night time routine. It's tiring but sometimes when she smiles and says what a good girl I am instead of calling me the devil and evil, it helps make it worth it.

One thing I do know, if someone asks me my opinion on it, I would not recommend caring for someone who has dementia in their home but instead would recommend a good nursing home that they can visit.
Helpful Answer (8)
Report

I didn't take my late mother in because she refused. Instead I had to leave my home and move in with her where she DEMANDED to live alone in her own home.
Helpful Answer (1)
Report

Mother doesn't live with me, she lives with brother. Initially, both mother and daddy lived there. Daddy passed from Parkinson's 12+ years ago. Mother is still hanging on. The last time I saw her (I do respite care for brother, although mother is still relatively independent, she cannot cook or clean for herself) I really noticed the dementia. And she also told me how amazingly healthy she is (having just been to the dr) Told me he said she'd live another 10 years. She'd be 97.....OMG. She's a hoarder. You can't clean for her since she won't allow ANYTHING to go out of the apartment. She just won a huge prize at Easter Bingo--a basket FULL of CRAP. Body lotions, more scented candles, MORE salt and pepper shakers, 3 stuffed animals, boxes of candy. Her place reeks of stale urine and all this hoard. Now brother's house smells like this.
I asked brother if he'd do it again and I got a resounding "NO!!!!!". It's been OK, and it's been horrible. SIL doesn't even acknowledge mother's presence. Mother has no filter and says what she feels. Hurts feelings, she doesn't care or maybe doesn't get it. Brother is in terrible shape, physically, I can see him dying before she does.
Mother's attitude? If "R" can't have me in his house I'll just move in with "E". Nope, she's going to an ALF if "R" can't continue.
Brother knows there will be nothing to inherit if Mother goes into long term care, and he's counting on the money. About $10,000. In my book, not worth it.
My hubby once ran past me the idea that HIS mother live with us. I said "She can live with YOU, but I'd leave." He thought I was awful--but this is a man who hasn't spent more than 2 hrs twice as year with his mom. And he'd happily dump her on me.
So----no, do whatever you can, but don't move aging, ill parents in with you. I have almost never seen it go well.
Helpful Answer (10)
Report

I think it depends on the mental and physical condition of the loved one, the financial resources available (including the type of insurance), and the physical resources available, i.e. other family members willing to help-out. Based on my parents decline in their aging process, yes, in a heartbeat, I would do it all over again - but I would've planned some financial bits much better. Both were/are "very easy" care compared to what I've read on this forum - however - I've had multiple, sporadic roller coaster from H*ll experiences - it's not all been as sweet as apple pie. If either parent or both of them were difficult, then I would've most likely not have been so involved - not because I don't love them - but their disease process just makes it mentally and physically too draining for me to assist and this disease process can't be reversed. I'm an only child with no other family to help, so I would've made different decisions if their disease process was just too much for me to handle. My parents immigrated from overseas. We were the only three members in this country from a very huge immediate and extended family overseas. Taking care of my now deceased father and current mother is my very first experience in dealing with aging in the elderly. I read of people growing old. I heard of people growing old. But I never saw it - and all of the possible complications of this process. I had a ton of friends while growing up, but I never saw their aging loved ones during their respective disease process; I just heard "Grandma is sick...is in a nursing home...is in the hospital...She doesn't know who I am anymore..." I never actually saw their mental and physical struggle. I've learned so much from this experience. Caregiving for my parents has made me a much better person overall. I wasn't a bad person before, I just didn't understand and appreciate the full scope of what's like to have good health...to be living in the present and now...and to be so thankful for this or that. After my mother passes away, I'll become a much better partner/spouse, business woman, parent, friend...because when you've been through the ringer, been back and forth against the wall, so to speak, you just don't have time for the petty stuff to get to you. Whatever obstacle you face, you will find a way to see the light at the end of tunnel. As caregivers, we are pushed to find ways to make things happen - because we love our loved ones - and this skill easily transfers over to other areas of our lives. For me: After my caregiving ends, I have very little fear of the unknown, a lot of excitement to take on something new, and a lot of confidence that I can manage every disaster skillfully - with a glass of red wine. :-)
Helpful Answer (3)
Report

I would.

Why? Well in part because my mom is family and family is supposed to be there for each other.

Now, if the time comes when I need to put my mom into a memory care facility, I'll do my best to find a good place which will be hard. (I have little confidence in these places)

But if I have to, i won't be failing my mom because I know she would understand if she was able to realize what was happening to her memory and that i couldn't provide her with the care that she needed.

I don't have any family members to care for me when I'm older, but I'd try everything I could to avoid them or anyone from having to be a care giver for me because I know first hand what it's like and I do not want to put that on anyone else if I can help it.

So:
Yeah I'd do it again if needed even though there's days when I don't know if i can handle it, but ay the same time I hope and pray that I won't need anyone to have to care for me.
Helpful Answer (3)
Report

I know its not easy and everyone here has been through so much. I do sympathize and empathize and know this is a very personal decision. In my case, I would do it again and I would do it better. I would have tried and found a better balance. I didn't do a good job of recognizing my limitations and looking for more resources. I was not super woman and I shouldn't have let the anger and resentment progressed as far as it did.
Helpful Answer (4)
Report

Yes, because mother gave me NO CHOICE! I DID IT. PERIOD.
Helpful Answer (2)
Report

you are an angel for doing it. Don't feel guilty either about anything you did or didn't do. You have one heck of a horrible situation. Have you thought about finding a carer? Part time? It seems to me that elders will listen well and take suggestions from anyone kindly - as long as it's not family. If you had an aide come in each morning to get her showered, dressed, fed, you could have the morning off. Of course they don't need to shower everyday, so the aide could help out then doing other things.
Helpful Answer (1)
Report

"I don't have any family members to care for me when I'm older, but I'd try everything I could to avoid them or anyone from having to be a care giver for me because I know first hand what it's like and I do not want to put that on anyone else if I can help it. " Thank you for posting that. Until you've been a carer, they have no idea. AND for those who babble on and on about taking care of their mom six years ago, and it was this way and that way -- it doesn't matter, because it was her own mother she cared for, and they got along. When dealing with a dysfunctional family, it's a nightmare being a carer. But I find the elder is nicer and more patient with someone outside the family. So when you get older, try a part time aide who comes 3-4x a week in the mornings... you might be surprised how nice it can be
Helpful Answer (1)
Report

Yes for my husband, he deserves it. No for MIL,selfish,witch
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter