Taking Care of My Mother

[VincenzoG91]

My mother was diagnosed with dementia four years ago, probably Alzheimer's Disease. My dad died five years ago, but during his last year of life, he was aware that my mom was starting to have some serious memory lapses. During my last visit to see him before he died, I noticed it too. Specifically, my mom was driving us home from her favorite restaurant and got completely lost.

My sister has been taking care of my mom. They live about 1,000 miles away from me, and everybody on my mom's side of the family lives 200 miles or less from my place. So after my dad died, my sister started spending even more time visiting with my mom, and eventually my sister and her fiance moved in to my mom's house. This was all according to a plan that the family came up with while my dad was still alive. My sister takes care of my mom, and gets to keep the house when my mom dies. My sister is a nurse, so she is an experienced caregiver, so it made sense. And when my parents kept moving farther south, my sister kept moving to stay near them, so she has been closer to our parents for a long time now.

Taking care of my mom has become hard on my sister this last year. Like some people with Alzheimer's, my mom sometimes becomes very frustrated with her inability to remember things, and starting almost a year ago, she has occasionally gotten violent, either pinching or scratching my sister. Back when she was normal, my mom was a very kind, happy, positive person who never resorted to violence. But she is now at the point where she can still carry on a conversation okay, if it's about stuff that happened years ago. But if I were to ask my mom right now if she had a nice Mother's Day, she wouldn't be able to tell me because she wouldn't remember anything that happened earlier today.

I just talked to my mom and sister a couple of days ago, to see if my sister was holding up okay. She finally sold her house a couple of weeks ago, so she can start paying down her excessive credit card debt and buy a used car to replace the one that died last winter. My sister isn't good with money, and her fiance is kind of lazy and complacent, so he makes lousy money working as a security guard. Fortunately, my mom is getting Social Security, both her own and my dad's checks, plus they had some money saved, and their mortgage was paid off years ago. So between Social Security, Medicare, and savings, my mom isn't costing my sister any money, even though my sister has had to hire a woman and her adult daughter to babysit my mom for 56 hours a week.

In the last few days, my sister and her fiance have both reached out to the rest of the family for help. The first time, they just wanted to send my mom around to the relatives for an extended visit with everybody. We did that last summer, with several people hosting my mom, but my mom ran away three times, and was actually trying to hitchhike home one of those times. She didn't know where she was and just wanted to go home. This time, my sister was thinking of a 2-month visit, but on short notice, nobody can do it, not even me. Then today, my sister left me a message saying that she wants to send my mom to live with me.

I don't think that I can do it. I live alone, and I have a salaried job, which means when times are busy, I work more than 40 hours a week. I have an anger management problem, and the business that I work for is going through a really rough patch for the next two months, where the company could potentially go bankrupt if certain things don't work out. I'm the Director of Finance, so a lot of pressure is on me right now. And my girlfriend is going to a really tough college, so I spend 3-4 nights a week tutoring her and helping her with homework. She has finals right now, and she is taking two tough summer school classes that start soon, Managerial Accounting and Quantitative Analysis. More to the point, I don't have an in-home caregiver lined up, and I'm not a nurse.

And I resent the idea of my sister getting a free house and then sticking me with our mom. That wasn't the deal. She is getting the house in return for taking care of my mom. We both have power of attorney to handle my mom's finances. I haven't responded to my sister yet, and I won't until I have had some time to talk it over with other family members. But I am leaning towards offering my sister a choice: either she continues to care for my mom and gets to keep the house, or we sell the house and use the proceeds to pay for my mom to live in a nursing home.

Am I being unreasonable?

[michelle23]

what about a centre that your mom can go to for 6weeks? i know they have those here in ireland. its temporary care normally for rehabiliation but it would give your sister some time to herself and some space and you could all come up with a plan in the meantime that suits everyone.

placing your mom in a nursing home permanently is a big decision and not one to rush into. if she is a danger to herself or others though it may be the only option.

its a really difficult situation and tough for everyone but your sister has sacrificed a lot and its unfair to place this responsibility solely on her. she has already sold her home so where will she live if your parents house is sold. shes also done this for 4years so i think it would be unfair to take the house away from her.

on the otherhand i understand how you feel. is there anyway your sister could move closer to you and sell that house, buy a new one near you that would be hers and you could help out 2nights per week?

be careful how you approach this coz this could cause war and im sure you dont want to fall out with family permanently over this

[VincenzoG91]

Good questions. Even temporary nursing home care would be extremely expensive compared to the current arrangement. My mom is physically health, though taking a handful of meds every day, so she just needs somebody to watch over her to make sure that she doesn't wander off or have an accident.

I agree that putting her in a nursing home permanently is a serious decision. Medicare would pay for it, but only after my mom's assets are all spent. If we want my sister to get the house, then we need to pay an attorney to set up an inter vivos trust or something like that, so that my sister gets the house instead of Medicare.

My mom's brothers and sister all liked the idea of having my mom move in with me last year, so they could all visit regularly, but I'm not equipped to deal with this, financially or emotionally. As you saw in my other recent thread, I am struggling with an anger management problem again, one that I have mostly had under control in recent years. Aside from the two incidents with my girlfriend in recent months, I also lashed out with extreme verbal abuse at my aunt's very gentle and kind husband last year, when he suggested that my sister wasn't responsible enough to handle my mom. When I heard today that my sister wants to throw my mom out of her own house on Mother's Day, I was so angry that I felt like flying down there and beating the crap out of both my sister and her fiance. Believe it or not, we haven't had any family drama in decades, except for my dad's death.

The problem is that my mom has lived there for 12 years now, so she has a lot of friends there. And my sister's fiance wants to stay there, close to his own elderly mother and also his 20 year-old daughter from his previous marriage. So they would want to keep my mom there if at all possible.

There is a lot that isn't known about Alzheimer's, but apparently people don't tend to live a long time after a diagnosis. The average is maybe 8 years more life. It wouldn't surprise me if my mom lived a few years longer than that.

I talked to a couple of family members recently about a short-term visit of a month or two, and the feedback I got is that nobody is available on short notice, but later this summer could work. And just now, I got another text from the fiance, saying that they would really like to send my mom here for a month, starting in a few days. Because nobody up here has a caretaker arrangement lined up, it would mean taking days off from work, and I don't have a month to spare. And if I took that month off at this critical juncture at work, there might not be a company left when I come back.

Maybe I'm too money-oriented, but I really resent that my sister can't tough it out for now. If she had stayed with her own house, she would have made more than $300,000 in house payments over the next 24 years. She is getting very well compensated for taking care of my mom, who might not be around too much longer.

[michelle23]

shes probably just really stressed right now and needs a break. can you take some holidays in the next month and fly down even for a week? if you just give a flat out no-itl probably cause a lot of drama. if you can offer to help in even a small way-theyl appreciate it.

you should tell them though that you cant just drop everything on such short notice. it is a lot to ask on a whim.

can you offer to pay for a carer even for an extra 10hours a week? if you can afford that it may help.

ask her what brought this on all of a sudden? something may have happened to cause extra stress that your unaware of.

[VincenzoG91]

Technically, I have enough time saved up that I could take off nearly 3 weeks from work. However, the company will either go broke or get bought out by a new owner within the next 60 days. The CEO normally spends half his time working from his home on the west coast and the other half the time here at the office in the midwest, but his wife had some serious surgery last week, so he is staying there until she is back on her feet. That leaves me as the only check signer in the office. And as the only accountant in our small company, I am the only one capable of answering most of the due diligence questions from the potential buyer, so I can't take off for even a week right now.

I could pay for an extra 10 hours a week for caretaking for now, but if I lose my job in late June, I only have about 3 months of savings. I bought my first house 18 months ago, so the closing costs and downpayment cleaned out most of my savings, plus I have been supporting my girlfriend while she is still in college. She will graduate one year from now, with over $100,000 in student loan debt. During that same time span, my sister and her fiance will have saved about $15,000 by not having to make house payments or utility payments.

What brought this on? I don't know details yet, but my mom got violent again, and apparently this was the worst incident so far. To keep things in perspective, my mom is 5'1" tall (155 cm) and skinny and old. My sister is 5'8" (about 172 cm) and overweight. And fairly strong, from having to handle patients at the hospital. So it's not like my mom is capable of overpowering my sister, though I'm sure it's upsetting when she gets violent.

[basilandthyme]

Vincenzo, I'm well acquainted with the issues of caring. Granted, my experience is in disability - not dementia - but the underlying issues can be similar.

First I'll address the money. No amount of free accommodation can make up for the amount of work and stress that caring requires. Also, $300,000 over 24 years really isn't that much. It's only $12,500 per year +/- interest. I'd lay money that your sister would prefer to be without that sum and have her life back. When you consider how much a professional carer or long term accommodation would cost, your sister is doing this very much on the cheap.

Anyway, your sister needs respite NOW - and good on her for asking for help. Too many carers battle on alone without asking help from family members. Has she contacted her local Carer's organisation for assistance? And yes, selling the house and using the funds to put your mother in supported accommodation is very much an option which should be considered. I realise it will eat through any inheritance, but if your sister is to retain any type of life, then you all may have to bite the bullet and make this decision.

[smackie9]

If your mom is having uncontrolled aggressiveness, she is nearing the end. I suggest your sister hire a caregiver to free up her responsibility. It's a way cheaper alternative. Just google caregivers for her area. You can also contact a social worker or an Alzheimer society for help.

[basilandthyme]

What brought this on? I don't know details yet, but my mom got violent again, and apparently this was the worst incident so far. To keep things in perspective, my mom is 5'1" tall (155 cm) and skinny and old. My sister is 5'8" (about 172 cm) and overweight. And fairly strong, from having to handle patients at the hospital. So it's not like my mom is capable of overpowering my sister, though I'm sure it's upsetting when she gets violent.

The size of the patient really doesn't make that much difference. I know women who are regularly assaulted by their disabled children - and their lack of relative size doesn't make it any more bearable. Yes, it's easier to defend ourselves against a smaller person, but a small person can still hurt us. More so if they are holding something to hit us with.

Add to this the constant stress of dealing with someone when you don't know when their next outburst will and how severe it is....it really takes it's toll.

How will your sister cope when your mother starts to wander? And when she becomes incontinent?

I'm going to be really blunt about the money: You seem to resent the fact that your sister has been getting free rent while you and your girlfriend have lots of debt and work issues. If your sister has it so easy, then you take her place. See if that saving of $15K pa makes it all worthwhile for you. I bet if you stood in her shoes, you'd take a very different view.

[HeartIsAching]

I don't think you're being unreasonable at all, though I do think your sister should get some negotiated compensation from the deal for the years she's cared for your mom. It would help her get her finances back under control and afford a new place of her own, and it's fair to everyone.

[smackie9]

I can see how she needs a break. I took care of my father for 6 months when he was dying from cancer...it was stressful and horrific at the same time.

[smackie9]

Here's a question....why would you buy a house when you are carrying such dept? 100,000 student loan dept?...I would be shipping her ass off to her parents because it ain't your responsibility.

[VincenzoG91]

I'm no expert, but according to this site:

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp?type=c arecenter_footer

My mom is somewhere between the fifth and sixth of seven stages of Alzheimers.

I feel like it would be tragic to put her in retirement home this soon. She still knows the names and faces of close friends and family members, and her cat sleeps on her bed every night. She usually knows her way around her home and her yard, and she considers the caretakers to be close friends as well.

Also, apparently the average annual cost of a semi-private room in a nursing home is $80,000 a year in the U.S. One year would wipe out my mom's money, and then she would have to give up the house before Medicaid would start covering the cost. The average lifespan of a person who just checked into a nursing home is roughly 865 days, or about 2 years and 3 months. So that would be $180,000, on average. I'm not opposed to the nursing home, I just want to wait while my mom still has a decent quality of life in her own home.

I understand that this is a tough situation for my sister, but she will benefit greatly as well. Between my mortgage and my girlfriend's student loans, we will be spending $300,000 more paying off debt over the next 20+ years than my sister and her fiance. Back when my mom was still almost completely normal and my dad was still alive, we all agreed on this course of action. And let's not forget, my sister is a nurse and I am an accountant. She is trained for caregiving, and I have an anger management problem. Long-term, the choice is not which one of us takes care of my mom. The choice is whether my sister (plus the caregivers) does it or a nursing home does it.

One more thing haunts me. Ten years ago, my sister saved my mom's life. My dad was a smoker from age 15 until a few weeks before he died of cancer. And he was overweight and borderline alcoholic in his later years. So nobody was surprised that he had a couple of heart attacks late in life. But one night my sister was at my parents' house ten years ago. My mom woke her up in the middle of the night complaining that her arm felt numb. I would have just thought, oh, you must have been sleeping in a bad position. My sister knew that was a common heart attack symptom for a woman. She checked my mom's pulse and then quickly drove her to the hospital. My mother did have a heart attack, and my sister's training saved her life. I'm an accountant, and if I were the one there, my mom might have just died.

[VincenzoG91]

Here's a question....why would you buy a house when you are carrying such dept? 100,000 student loan dept?...I would be shipping her ass off to her parents because it ain't your responsibility.

I didn't have any debt when I bought my house last year. Now I have a mortgage that will take me a long time to pay off. If I make a couple of extra payments each year, I can pay it off maybe 16 years from now.

My girlfriend's father died when she was young. Her stepfather is retired and living off social security. Her mother works part-time as a nurse, and that's as much as she can handle since she was in a car accident several years ago. And her younger half-brother has Down's Syndrome and lives in a group home. So her family can't afford to help her.

We can handle our stuff, but it would be ridiculous for us to try to take care of my mom while my sister gets a free house. I would sooner use my power of attorney to sell my mom's house to pay for her future care if my sister can't or won't handle the responsibility. If my dad was still alive, he would be furious at my sister right now, and she was always his favorite.

[smackie9]

I sense a lot of anxiety from you...you keep coming up with excuses to justify your decision to bow out of the responsibility. Look your sister obvious is just looking for a solution because she is entitled to having a life, now all of you need to step up and seek out some resources that could help her situation. Get on the net and start doing some research. Like I said you can contact social groups, the Alzheimer society and other organizations to help you and your family find some options on how to deal with this. You don't need to be here shoveling excuses at us, you need to get together with your family and work through this with them....

[VincenzoG91]

The position of the overall family is that my sister and I are financially responsible for taking care of our mom. Her older brother is in his mid-70s. Her youngest brother is in his late 50s, but after a costly 8-year battle with lymphoma, it finally went into remission last year. Her other two siblings are right around 60, and they have their own family issues. They are potentially willing to host my mom, but it can only be a short-term thing, because my mom ran off three times in three weeks last summer. She can't be left at home alone anymore, so that's a bigger burden then just a normal house guest. And my sister didn't give any warning that she wanted help, this suddenly became an issue last Thursday. There is zero chance that I can deal with my mom for more than a few days in the next two months, and nobody else in the family can handle a sudden visit right now. On Thursday, we all agreed that something could be done for maybe a month in late summer.