First things first… This is my first time posting but I often read the boards for encouragement and support. Thank you all for sharing your stories with such vulnerability.

I’ll try to keep this as brief as possible. My mama (age 67) has been suffering from dementia for about 4 years. It had been a slow, gradual progression until about 6 months ago, when we started seeing changes happening much more drastically. She has been refusing to go back to the doctor and my dad is, honestly, afraid to rock the boat, which I very much understand because he’s the one who has to deal with her anger and insults (she has become kind of nasty as a result of the dementia). My siblings and I decided it was time to step in. We have been taking turns going home and dragging mom to her appointments. We found out today that there is severe vascular blockage that needs to be dealt with ASAP and, since mom refuses to allow a nurse to come to the home to care for her, we are faced with the decision to begin looking for placement. The dr said, if they are able to treat the blockage, it is possible for some of the dementia to be reversed, although this is obviously not guaranteed.

So, here’s where I need guidance. My parents live in Dayton, OH, I live in TN and my sister lives in NC. I’m 28 years old, single, no children, and have a job that I really enjoy. I left Dayton after high school and have not looked back. It’s pretty much the last place I ever wanted to live again. But I’m trying to make a decision about whether or not I should move home to help support my dad as he adjusts to the trauma of having to visit his wife of 37 years in a nursing home. I also want to be able to spend as much time with my mama as possible, as I know this is going to be very difficult for her too. As I have mentioned the situation to different people in my life, I get one of 2 responses: “GO! You know you wouldn’t be able to live with yourself if you weren’t there.” or “There’s really nothing you can do while she’s in the nursing home. Just try to go home as much as possible and stay in Nashville.” My job has been very supportive and will understand if I decide to leave, but have also offered to give me a month off if I were to decide to just go home in the beginning of her placement and come back.

I know I ultimately have to follow my heart but I also don’t want to make a completely emotional decision. I’d appreciate hearing input from others who have been (or are currently) at this crossroads. If you are believer, I welcome any spiritual advice as well.

God bless you all.

Deirdre

I'm so sorry you are all going through this.

I don't really know much about vascular dementia, but if some of her dementia can be reversed, will she actually need a nursing home now? Additionally, behavioral medicines may help her quite a bit too and she may be able to stay at home for awhile longer if that's an option you are considering or if they do help her, again, she may not qualify for a NH. Or maybe not. She may be willing to go to adult daycare if you don't call it daycare, but call it a senior center or a job, they often have nurses there at least some of the time if you are looking for alternatives. Is your Mom deteriorated enough for a NH? I just got this picture in my mind from reading your post that she's not nursing home material yet (maybe the picture in my head is different from how she is). From what you've posted she doesn't seem all that far along and if they treat her and if it's reversible (I have no clue about vascular dementia), she may really not qualify for a NH.

Are you planning to have her blockage treated?
Only you can make this decision. I take care of my Grandma in her own home. It was the right decision for us. I find it challenging because it's really hard to watch someone I love decline. But, I also find it very rewarding. You would be moving home to support your Dad and advocate/care for your Mom in a NH, correct? Your Dad is self sufficient? Any chance that they'd both move to where you live and work now?

If you're planning to treat your Mom, perhaps it is premature for you to be deciding on what to do about moving. Could you wait and see how the treatment goes and if she does need to be placed in a nursing home now or if she even qualifies for a nursing home?

Lots of other people including long distance advocates with a loved one in a NH or ALF post here and they can give you their advice. I hope this works out for the best for all of you.
I do apologize if the picture that I'm imagining, especially with treatment is different from how far along she will be after the treatment. She may really qualify for a NH, but if the doctor was that hopeful and if she was doing well fairly recently, I'd hate to have you move thinking she was definitely going to a NH if that's not going to be the case.

1) Her anger and nastiness can probably be controlled with small doses of the right antipsychotic meds, like Seroquel, Risperdal or Zyprexa.

If your dad hasn't talked with her doctor about this, it could make a big difference in quality of life for both of them and prevent her placement for awhile.

2) As far as moving home - unless she has other health issues, you should know that she may live for many more years - easily a decade or more.

This disease is a marathon, not a sprint - it's not like our LOs are on the verge of sudden death at any moment. If you plan to be with her daily, you're planning to make her dementia the top priority in your life, whether that's your intention or not.

Believe me, seeing her daily - whether she's in a NH or not - will absorb all of your mental and emotional energies.

There's just something about this disease...it grows to fill the space available in the minds of family members and it is a constant battle for many (most?) of us to avoid having it be our primary topic of conversation with our spouses, kids, and everyone else. Even when we're not talking about it, we're thinking about it.

During this time her caregiving needs will dramatically increase and her cognitive functions will become more and more confused and impaired. If you jump in with both feet now, most people find it very, very difficult to step down their involvement later.

So ask yourself how your decision will feel in 1, 5, 10, 15 or 20 years (when you're nearly 50 yourself).

Do you fully understand the implications for your own income security, for example? That probably seems a long way off right now - and yet the decisions you make now will determine the kind of life and choices you have in your 40s, 50s, etc.

Once someone is placed, some family members visit their LOs every day - and others visit weekly or every other week or even less often, depending on their personal situations and choices.

If you really believe that your employer would understand and it is not going to put you in a bind financially, then I think you should go home for whatever time your are able.

It sounds promising about treating your mother's blockage and the possibility of some of the dementia being reversed. If the doctor still recommends treatment, your presence will be helpful in doing whatever it takes to make that happen.

So many of us find ourselves in dilemmas because of this disease. Whatever you decide to do, try not to feel guilty.

You said you were a believer so I thought I'd add a verse.

James 1:5-6 "If any of you lacks wisdom, He should ask God, who gives generously to all without finding fault, it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind."

Sometimes it is hard to discern what is the right thing to do, but as a believer we have the gift of prayer to rely on.

Presently, I need to take my own advise and do a lot more of that (praying), in making a difficult decision regarding my mother.

I am sorry that you are going through this with your mother at such a young age. I wish you and your family all the best. Let us know what you decide.

Speaking of Wisdom.

I am so glad that Grassflower responded to this post. I believe she has a lot of wisdom regarding this disease. (She was posting at about the same time as I was originally; and I didn't read her post until after I posted.)

From what you wrote I believe that her situation is serious. Serious vascular blockage, even reduced rarely gives a person another decade. And depending on how they reduce this there can be a lot of changes to her abilities and health.
One surgery that they perform for this leaves the person physically worse then they were, but to create better circulation, there is no other choice.

As far as moving home, it is one of those tough decisions. I would take your company up on the month and then look into the Family Leave Act.

Deirdre,
Welcome to this forum.
So sorry for the reasons you need us but aren't you glad we are here?

You have had several good responses but it is up to you. The month that your present employer has offered sounds like a good deal. It would give you time to evaluate the situation up close and determine if you would be able to move back home and still maintain the quality of life that a 28 year old should have.
If you are going to place your mother then, she is ok as they will look out for her and your dad will get used to going to see her and will be relieved knowing that she is not in danger of hurting herself or him. He will adjust faster than you think due to less stress on him for care.
We will pray for you as you make this very difficult decision.
Sheryl

Thank you all so very much for your responses. It was so encouraging to wake up this morning and see that you all had taken the time to consider my situation and reply.

The reason the NH is likely a necessary option is that, in order to treat the blockage, she will need to be on intensive medication and monitoring, which she will not allow us or an in-home provider do. We talk to the doctors next week about the treatment options so I will definitely make sure we talk about the possibility of anti-psychotic drugs (although we have mentioned it before and were told it might not be an option) as well as surgery options. In the preliminary conversation, the dr. recommended a 6-12 month placement, with the likelihood that she would be more compliant and willing to allow in-home care at that point. We'll find out more about the plan next week.

Grassflower, thank you for providing some practical things to think about. You said "seeing her daily - whether she's in a NH or not - will absorb all of your mental and emotional energies." I agree that it would take up more of my time and energy but, honestly, I'm already thinking about her constantly, not to mention worrying about how my dad is handing everything daily. I wonder if being there might actually alleviate some of that stress because I could see for myself (my daddy is not very good at letting us know when he's having a hard time; he doesn't want to "burden" us... no matter how many times I tell him we are all in this together and don't want him carrying a heavier load than he can handle). I don't know.

Jenny, thank you for the scripture. It is a much needed reminder that not only do I need to be in earnest prayer, but I need to BELIEVE that God will provide the answers if I seek them. Sometimes I find myself praying and thinking about what I'm going to do at the same time. That's not complete surrender.

Thank you Jellybeans, Anita, and Sheryl for your input and encouragement as well.

I will wait to make my decision until we talk to the docs next week about the treatment plan. Then I will have a better idea of how long they expect her to be in the NH and the presumed outcome. Again, thank you very much for the support. I know you are all fighting your own battles too. Know that I am praying for you and your LOs as well.

Grassflower had great, no excellent advice. Please do not give up your career and life. Go home often, take the month offered, check into fmla. At least in CA, you do not have to take it all at once. You can spread it out to take and take 3 or 4 days at a time.
Yes, it would be tiring but as pointed out this disease can take years and it is debilitating to the person with AD and the LO's who care.
You can show your love in many ways. You can care in many ways. You do not have to give up your life for your parents.
And that is what will happen. You will be consumed with AD.
I have already spoken with my husband and adult children and made it very clear that they are not, I repeat, not to give up their lives if this happens to me.
Your parents hopefully feel the same.

I'd hold off on the moving until you figure out what course of treatment will be recommended. If she's in a NH, then you won't be able to do much anyway, except just be there. If your father is in good enough health that he can care for himself, then you can visit when you can. I would not, at your age, just move.

Ultimately, though, it is your choice.

Deirdre,

I am so glad you have shared your story with us. Many times we don't know about the people reading our posts that don't share often. I can only imagine the concern you have and the decisions you are facing at such an early age.

I love what Grassflower said about the disease expanding to fill our lives. You said you've already seen it and so have I. I struggle sometimes to get it out of my head for brief periods of time so I can really enjoy myself, it is always lurking in the back of my head.

The scripture about wisdom is so poignant to me because it was one of the ones I turned to for wisdom when I began my caregiver role 4 years ago. God blessed me with all I have needed. But I will caution you with some wisdom my pastor shared with me. No matter what course you decide to take, your love for your parents will constantly fill your mind with thoughts, what to do, how can I help, how can I make this better. Ask God for wisdom, by all means, but don't spend all your prayers asking for things that will help YOU get the job done. At some point, you have to accept that "all you can do is all you can do and you must leave the results in God's hands". It is about the best advice I've gotten in this journey.

I pray you find peace for your journey and the serenity to leave the final results in God's hands.

You have gotten some great advice. In my opinion I do not think that you should make the decision to move just yet. I would not want either of my daughters (both very near to your age) to make this kind of decision without a great amount of thought and also information from the doctors. Hopefully they will never have to make this kind of decision.

Some things to think about-

What is your fathers opinion about your possible move? Does he feel he may need you there? He may be more stressed when she is in the NH, but, he may actually feel less stressed knowing that your mother has full time care when she is in the NH. Does he work? Does he belong to a senior center or another community group where he can keep busy and socialize?

You have a job you really enjoy. They are willing to have you take some time off. This is a big plus on the side of not moving permanently.

Why don't you put the decicion off until you see how your parents cope with the upcoming changes? Unless there is something you have not said, it does not seem like you need to make the decision to move right now.

Thank you thank you thank you for the additional input. My dad would never tell me he wanted me to move back, even if he really needed me to. Just for clarification, he is 62 and still working. His hope is to keep doing so for the next 3 years so he can collect full retirement. I very much want that for him as well, as he loves his job and I truly feel it is therapeutic for him to have the distraction and mental stimulation. My mom stopped working at 62 and it wasn't long after that we started seeing the beginning signs of the dementia. Also, if I did move back, I would still have a job and my own place. I'm far too independent not to It is also possible that I could transfer to the local agency of the organization I work for. That being said, I know it would be a huge change for me and I definitely don't want to rush into a decision that may have serious ramifications for my life and well-being. I love my parents more than anyone in this world. They have always supported me in every decision I have made and I know this would be no exception. In her right mind, my mom would probably tell me to stay here and, although my dad would love for me to be around more often, would not fault me for deciding to stay.

Thanks again for your encouragement and wisdom. Keep em comin! I'd especially love to hear more from those of you who have had to make this decision.

You have huge decisions to make and take your time making those decisions. Even though this is a very highly emotional situation, you do need to understand all that it will be mean to you. Grassflower has said it best. You are so very young and your life is just taking off, I am so sorry that you are faced this with at this time in your life.

The best seems to see what the treatment options are, then go from there. If you don't move back home, it does not mean you are not still caring and supportive of your family, because I can tell from your posts, no matter where you are living, that is the person you are, caring and supportive, just please remember to keep yourself and your life in the equation of all of this. There are resources available for your parents that can be supplemented by you and your sister, you don't have to try to do it all, because honestly, no one person can. This is something that we try very hard to keep a balance with, because AD affects everyone in the family.

Another thought - you might consider a few visits with a family therapist who's experienced in working with similar situations.

Right after my mom was diagnosed, I found it very helpful to talk with an outside party who could ask good questions, pose new ideas and perspectives, and reframe things in ways I might not have thought of.

You might also seek out a local support group, preferably one with participants whose family members have early onset dementia, again just to get more perspectives and information from folks who have somewhat similar situations.