Except I am one person. And I also have my own serious chronic physical health issues for which I’ve been operated on and under medical care for many years. I need my full-time job to support a roof over my head and my health insurance/care. I am tired of “Monday morning caregiving quarterbacks” who comment on, critique, and advise me on what I do or don’t do, and when and how, regarding my caring for my parent. If only they would, as I like to say, be better at “thinking it through,” realizing that at the end of the day, they can say or do all they want–but in the end, it’s me who can’t walk away and who is responsible for the decisions, not them.

And oh, how people take it for granted when they also don’t think through about how they might have siblings, grandchildren, nieces, nephews, spouses, and the like, who can help divvy up the work and the personal support–on physical, emotional, spiritual, financial, and all levels. They are not there day-in, day-out, when I must divide myself in at least 3 different directions holding down a job, taking care of my own health, and then supporting my mom in all different ways, making phonecalls, doing the bills, arranging services. I am not good at and cannot do everything. I try. So does my mom–I’m so proud of her! I’ve never had the practice at doing this before, it was my first widowed parent. Ditto the first time for my mother.

So if you ever see me, and wonder how or why I didn’t do this for my mom yet, seemingly, or why this is such a way or she wants to live a certain way, or I cannot be there at a moment you expect it or do not understand how I am living my life while attempting to help mom with the best quality possible for hers–please “think it through,” and give me a break and be thankful that it’s not you who is the only-child caregiver and having to handle it all. I wouldn’t trade these past several years for anything, giving back to my parent and trying to say “thank you” in very small return measure for the countless hours, things, and sacrifices she made for me. But while my parents chose to have me, my life is not my own in middle age now, and that will have to wait until later. Please be patient with us and with me, and with all us caregivers of all types in general.

I hear you loud and clear. I am so very sorry for all you have (and are) going through. I wish I had an easy solution for you. It’s not easy changing bureaucracy; but if we educate people as much as we can (one way being via personal stories such as yours), and spread the word about what family caregivers truly need, we are trying to make a difference, and may succeed in the long run.

From your moniker and your writings, it sounds like you need more respite yourself. Do you or your daughter have any friends or neighbors that can give you a break? Even an hour or two a few times a week would give you time to get away and decompress! Please take care of yourself — physically, emotionally and spiritually! If there is an Alzheimer’s Association in your area, call and ask them about free respite services — our local chapter helps arrange that for families.

Welcome to TLeC, and thank you so much for sharing your story (and outrage) with us! We understand and will try to support you as best we can online. Hang in there.

Dear Sandy,

I hope that your mom’s hospitalization is behind you and the doctor’s have figured out what triggered it. But, as you mention, you’ve been dealing with her personality disorder your whole life. I would certainly ask your grown children and any other friends or family you can for some help with your mom. And make it specific. Don’t just say can you come by to visit; say, can you please take mom to the (fill in the blank)appointment for me? It’s on Thursday at 3pm. Or, could you please do Mom’s/Grandma’s laundry for me every other week?

The second thing I recommend is that you get yourself to a support group. Contact the Alzheimer’s Association chaptere nearest to you. This can be done online (www.alz.org), phone on their 24/7 hotline (800-272-3900) or in person if an office is close by. They have many excellent support groups and/or counselors available for free to help families of dementia patients. If your mom does indeed have dementia, the Association should be a tremendous help. You might also ask your mom’s doctor (and even the hospital) if there are support groups they know of you can attend. Hang in there and good luck!

Dear Sheila,

I am so sorry about your siblings’ lack of assistance with your caregiving responsibilities. Many family caregivers experience this, so you are not alone. You have great strength to hang in there as you do, and to stand by your mom.
You say it isn’t dementia, but have you had her evaluated by an MD to be certain? If the diagnosis is any type of dementia, the Alzheimer’s Association can help in many ways (see above contact info I gave to Sandy) and a good place to turn for help. If not, I would also try to get at least a little counseling to help deal with your caregiving load via a referral from your doctor or clergy. I agree with how you feel about it not being fair, and hope you can come to peace with the family situation. Please know you are not alone, and find additional help online or off.

I work full-time, but I no longer have any opportunity for advancement due to my caretaking duties. I dropped out of college 3 times to take care of Mom, wiped out vacation several years in a row and took leave without pay. My physical, emotional and financial health mean nothing to Mom, my brother or sister.

Mom also has behavioral issues. She thinks nothing of getting me up in the middle of the night to smooth her blanket, get her a glass of water, just to complain. It doesn’t matter that I suffer from multiple health problems, including severe insomnia, and that I have to go to work. I have had to go to work on only 1 hour of sleep. Professional and non-professional alike bring up the possibility of dementia. I say no. She has always been like that!

Walking away is not an option. People who walk away from their responsibilities are rats. The only way to take care of myself is to become one of them. I am not willing to do that.

I wish I was an only child. Then I would expect to do all this with no help from anyone else. I would also inherit whatever is left. Considering what I have done to my financial and physical health, both in the present and the future, I desperately need it! My doctors say that I have probably shortened my life by taking care of Mom.

When the time comes to inherit, my brother and sister will be right there with there hands out, demanding their FAIR EQUAL share.

There needs to be a cultural change in this country. Society should demand that children share in caring for their parents. If they walk away from their responsibilities, they shouldn’t expect to benefit from it.

Quick background: I’m an only child (age 67), divorced. Both parents are still living, age 93 – frankly, I feel blessed to still have them. Unfortunately, mom has a long-time personality disorder (since her childhood) – temper tantrums, irrational irritability, argumentative, etc. , emotionally abusive – particularly now to her husband (my dad). Her emotional status has been the “family secret” for years – she’s skilled at masking behavior when around other people. Two years ago, we moved the folks into an assisted living facility – the staff soon became aware – heard her screaming at dad, plus other behavior issues. Psychologist was called in for an evaluation. She has since succeeded in toning down her behavior somewhat- but continues with episodes of outrage, etc. At other times, she can be nice – especially when around others outside family. She is not always ‘nice’ to the assisted living staff. This weekend, she was hospitalized for psychotic behavior, rage – psychiatrists treating her are aware of her background … suspect this excessive outbreak probably brought on by a combination of prednisone prescribed by her GP, her delicate mental condition and onset of dementia.

My problem: have no support group – makes things hard sometimes, get a little stressed. My grown children (age 41, 43) are wonderful, loving kids – but rarely help with grandparents. They are busy with their kids, jobs, life … as they should be. Should I ask them to help more – or let it be? (Sometimes, even I don’t want to help with my parents – I can certainly understand why they don’t!) Advice?

Welcome to TLeC!

I’m sorry you are having such a difficult time in the role of caregiver for your mom. You ARE a wonderful son — don’t ever doubt that. In a space this short, I can’t begin to address your challenges in depth, but I can give you a starting point. The National MS Society has a website and within it is an area for caregivers. Here is the link to it — I had to break it into 3 lines to fit here, so copy & paste it into your browser:

http://www.nationalmssociety.org/
living-with-multiple-sclerosis/relationships/
caregivers/index.aspx

It lists books, articles and resources within their site to help caregivers of MS patients. If there is a local chapter where you live, go in there and speak with a counselor in person.

When your mom does go out — you need to force yourself get out and have a break, too, with no guilt! Perhaps take up a new hobby where you can meet new friends. For example, a few months after my dad died, I went to a dance class at a local recreation center, intending just to take the one class and check it out. Nine years later, I’m still dancing, and have made a whole new circle of friends in this great dance world. It doesn’t have to be dancing, but pick something you’ve been curious about or somewhat interested in and pursue it. It will be good for you mentally & physically to have some new interests for those times when your mom is occupied with her own activities.

As I said before, these are just a few brief ideas that hopefully will help relieve some of the stress you are under. Best wishes.

I answered your post above before you wrote the second one that added a little more about your husband’s caregiving situation with his siblings, and also the part re the unfairness of the possible inheritance from your Mom. I’m sorry I didn’t see your second post until today!

I’m sure it makes it even harder for you to see how your husband and his sisters manage so easily in caregiving for his mom, when you have to struggle along with little help from your own siblings. Please re-read my post above about possibly finding others to help you out and also taking some respite time for yourself.

It doesn’t seem fair that you are going to have 20 years of caregiving under your belt, and your sisters won’t have done much if anything, yet you all will inherit the same amount. I’m sure you aren’t thinking of the inheritance as “pay” for what you are doing. The “bonus years” you have with your mom will be something your sisters will never receive. These are precious times that they won’t have to look back on and cherish (even though caregiving feels so very draining to you right now). That person-to-person caring relationship is worth far more than any monetary gain to come. Since you already seem to be that type of daughter, I’m sure you’ll agree. I think you need to find a way to take a caregiving break, and re-establish a positive outlook about being a caregiver. I know it’s easier said than done, but I’m sure you can accomplish it. You sound like a strong and resourceful woman. Make it happen.