Discussion with my son

French

I was alone with my 15 years old son this evening. We discussed and his question was : How long can you keep going while working. 

I answered « I promised myself I would make it to the end of the year. »

He replied « it will be too difficult, this week you have been 3 days out for your work. It was ok because I was at home (school is finished). But how will you do in September. I know you will have to travel again ». He is right, I will have to go to Japan in November and I will have many other journeys in France. I have no idea how I will make it.

He's right on target... I'm anxious about it and I know I won't be able to continue my work and take care of my partner. 

He is young but clearly sees the disease progression. He told me that he sees the toilets that is not flushed, the pee on it... and said that next step will be incontinence. When I say that my partner is between 5 and 6, he answers that 6 has began almost 6 months ago.

His next question «  do you have solutions? »

I explained him what I explored. 

«  Yes but what will you do if there is no place when you will need? »

Again right on target.

I already had this discussion with my sister in law, but having it with my son doesn’t resonate the same. My son lives with me, knows me very well as well has his step father. He also still needs me. Strangely, It makes me think differently. 

 Now I think that he is right. It is impossible to be a caregiver and do my job (research director with international responsibilities). I can’t stop working at 49 and I can’t change job. I feel like I'm between a rock and a hard place. As children were growing, these 4 last years, I took more responsibilities and I like it. I know that I will be very unhappy both because I will I be unable to do my work fully and because I will struggle to manage everything.

I must seem very selfish. Others would have changed job to care for their partner. He wouldn’t accept that, he is very proud of me when I answered interview in tv or publish a new book. 

sandwichone123

I don't think it is selfish to acknowledge your humanity or your other responsibilities. I do not think being selfless is an option when you have people depending on you. You might be able to give up everything for your spouse, but not if you also have children, and your son is pointing out that there are other priorities and needs. Acknowledging these is not selfishness, even if you also benefit from the act.

Joe C.

French, I don’t think you are selfish in the least. This is a very difficult journey under any circumstances but at your age and having your son to care for makes this monumentally more challenging. I know you feel compelled to care for your partner but your must also consider your future and that of your son.

JoseyWales

I'm living a very similar life to you. DS is 20, has been home for the past 16 months due to Covid. He'll go back full time to college in August. My DH is in almost the same place as your husband. I'm off for the summer, but go back to work full time in August. Lucky for me I have no need to travel, but I'm only 53 and I just don't feel I can quit working. I sometimes feel selfish about that, though. I *could* use our retirement savings to pay for our needs and my health insurance, and then go back to work when I'm done taking care of DH. But how long would that be? Would I need to go back to work at 60? 65? How could that even be done? 

But, like you, I wonder how I'll manage DH on my own after a full day of work. Right now he usually sleeps at least 6 hours at a time. What if he stops that? What happens if we have toileting issues in the middle of the night? 

There is no easy answer, and I'm struggling too.  

Stuck in the middle

French, your son is a wise young man.  If life is a canoe trip, you are hearing the roar of a waterfall ahead.  It is time to portage.

June45

French, you are not selfish...not at all. And I agree with Stuck, your son is an amazingly wise young man.

Jeff86

Your son is wise beyond his years.  

Not selfish on your part 

This horrible disease, unfortunately, will ultimately take your partner.  But that doesn’t mean it has to take you, too.  You have to adopt a broader view—what’s best for you partner, yes, but also what’s best for your family and what’s best for you.

Your goals have to be to assure that your partner gets the help he needs but also to survive his illness.  Surviving his illness means among other things preserving and sustaining your career.  It may be a financial imperative to continue in your work but it’s also about intellectual stimulation, achievement, recognition, and so on.  It’s too much to give up, and in his right mind your partner would not want you to.  

Stay strong!  I have also made the choice to continue working, while figuring out high quality ongoing care for my DW.  I have no regrets; you shouldn’t, either.

Stuck in the middle

Josey, my mother retired at 62 at my father's request (he was retired, bored, and lonely).  The job she left was a fairly decent position with an insurance company.  She went back to work at 65, after my father's death.  She found a job taking telephone orders for sporting goods, in a sweatshop environment in which any time away was recorded by her computer.  She learned to drink very little because the restroom was several hundred feet away and she could not walk fast.

A woman of her acquaintance worked in a Church day care on Sunday mornings so she could afford to "eat out" at McDonald's once a week.

That is what early retirement and a return to work in old age means:  menial work and poverty until your health goes south, then it gets worse.

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M1

French, I know you must be proud of your son and with good reason (I remember what  15 was like around our house).

I believe I have also heard you say that your dear partner does not want this for you. In his more enlightened moments, hasn't he told you to leave him? The selflessness of that is enough to break your heart. No wonder you love him so.

And like everyone else: no, you are not being selfish. You need to go on, for yourself and your children.

You nay be wise to make arrangements for placement now. In the long run, a few months will not matter to him but will matter to you. Just like he's made friends at day care, he will make friends in his new environment and he may have an easier time adjusting now versus later.

Bonnie chance amie.

ElaineD

Dear French,

You have a marvelous son!  And he is right on target.  

My sons (much older than your son) recognized the symptoms of memory and attention loss three years before I could see the symptoms.  I think we become accustomed to our LOWD.

Your DH's condition is going in only one direction, and generally what I've observed is that the later stages of AD seem to progress more quickly.  

I know this is hard and I have a problem even imaging what it will be like when my DH has to move to Assisted Living.  We currently live in Independent Living, and AL is across the street.

You have managed every aspect of your journey so very well, French!

Now you must enter a new stage.  And it is time to focus on your family and your important work, knowing that your DH is safe and well cared for.  

Please share with us as you can.

Elaine

Mint

Dear French,  I don’t see you as selfish.  I see you as some one with a lot of weight on her shoulders.

Your son loves you and is worried about you.  He is carrying a lot of weight too.  Glad he felt free to talk with you and isn’t having to carry it in silence.

Agree you are way too young to retire.  

You have received good thoughts and advice here.

Hope you can find a plan that works for all of you.

Take care 

French

Thank you for all your kind answers.

In fact, the stories of all the wonderful caregivers here don't help. I know we are all different and our situations are different, especially eoad. I admire all the people here, and I don't feel up to it. I know that most of you don’t have the choice because care facilities are very expensive in the us. This is not my case, my partner can easily afford it. 

My son also asked me « what are your solutions »

I have begin to prepare the next step that I was foreseeing for the end of the year... but as the deadline arrives, I begin to panic. It’s not so easy, because I feel he isn’t advanced enough to go in a memory care. Yes, but how can I know how he will be in 3 months? 

I have 3 solutions :

- the memory care he has tried in May and it wasn’t a great experience, it will be plan C

- 1 memory care we have visited in June. It seems much better. As soon as they will have a place, we will organize a respite stay so that to try. Certainly not before November. For the moment it is my plan A or B depending on the next solution.

- the Tunisian solution: I still have to discuss with his sons, prepare the documents and try it perhaps in January. It could be plan A or B but nothing is ready.

In fact there is a fourth one, professional families who welcome tip to 3 old or disabled persons at home. It is organized by the local administration and the documents to provide are so complicated that I begin to abandon.

So, as you can see, we won’t be ready at the end of the year and we have to find a transitional solution. I can hire more aid, but all this people coming home is not very easy for me and my 2 children. It is also very complicated to manage. 

LadyTexan

Greetings French.

You have a wise and wonderful son.

You are not selfish. You are brave. You are intelligent. You have too many responsibilities and demands on you right now. It is not humanly possible to do it all. Please do not let this disease destroy you and your career too. Your work is important. Your financial security is important. 

What is the Tunisian solution?

Blessings to you.

-lt

White Crane

Dear French,  Your son sounds very mature for his age.  And he still needs you.  You don't sound selfish.  You need to think of yourself as well as your son and your LO.  As you go through this journey, may you find the right answers for you and for them.

ButterflyWings

French, you are not selfish at all. I am facing the same decision and reaching the same conclusion as you. Only we have to figure out $10,000-$12,000 a month for MC placement, which we do not have. I have an amazing job which was not on the radar when Alzheimer's knocked us down. It is allowing me to keep us out of the most desparate situation that my LO got us in before I realized what was happening to him. But I cannot do both, well, for much longer. The last couple of weeks dealing with the worst escalation so far, has made that clear.

I had thought, OK we can keep DH at home no matter what happens, I just need to hire help. But it is proving very hard - maybe we have a shortage in my community? All vaxxed up, and no one to hire. I will keep trying. For now, I need a respite time so I can catch up on work. (Kind of crazy).Your "end of year" timeline made me think about setting one of my own, to have a plan for if home care can't work after all. This is not something I had considered until this week.

Your son is brilliant. He is speaking about your needs, but I hear his own also, right? He needs and deserves a mom that is healthy and happy, and whole.  Or at least at peace with her choices and prioritizing yourself is something to be happy about, even in the tragedy of a dementia diagnosis. This is what another AD wife told me: put yourself first. She is the most giving, selfless, wise, woman you could meet. Put yourself first she said. Her husband has been in MC for years and she visits weekly to be his wife, not his primary caregiver anymore.

Last point, I always remember reading about the first woman on the US Supreme Court,  resigned that lifetime job when her DH was diagnosed. Shortly after she gave up her historic career, he had to be placed and it wasn't long before she walked in to see him holding hands with his new girlfriend. We know it is not the same as a betrayal from a healthy spouse but still. She said her decision to retire from the Supreme Court, largely to focus on her husband's needs, was "the biggest mistake, the dumbest thing I ever did". And she was 75 at the time. https://www.forbes.com/sites/nextavenue/2019/03/19/sandra-day-oconnor-and-alzheimers-a-personal-story/?sh=656963176091

Trust your son and your love of this career you are enjoying. I will be struggling with these decisions too. But the current situation isn't sustainable and something has to give. I don't want that to be me, or my career that is the lifeline for our entire family, after the pre-diagnosis asset depletion I did not know my DH was doing. This is not an option. I have to succeed or will be like the elderly ladies Stuck described. Bless them, but that is no way to live if I can climb back up from his bankrupting us. The fact is, my LO is dying and I can't help him really. We try our hardest, but at what cost? Very sobering. Give that young man of yours a big hug. Kudos to you for keeping the line of communication open with your children like that. Beautiful.

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Quilting brings calm

French 

I think you may have to decide upon a temporary placement to start with and remain in place until you find what you think is a permanent place. You need care now before you start traveling for work. And you DO need to keep your job.  The short and long term financial security of you and your children depend on  it. So find someplace to put your LO now and then  keep looking for a more optimum placement.

What is your 15 year old going to do while your are traveling? Stay home by himself?  In the USA, that would be a non starter.  A 15 year old and a PWD living alone together would also be a problem here.  

French

Thank you for your entries.

I sometimes let my partner alone with my children one lunch or one evening but never a whole day. I did it 16 months ago but I wouldn’t do it now.

When I travel, my son and my daughter (19) are to their father, so there is nobody but the cat at home and I would have to hire somebody for a whole week, impossible. For the moment I gamble on the fact that my travel to Japan in November will be canceled, but it could not be the case.

Yes, your are right the end of the year is still far from today and the period will be challenging : September -> December playing tightrope walker will certainly produce damages. 

After your remarks I am thinking I must accelerate on the Tunisian solution and try it as soon as possible.

LadyTexan, i posted on Tunisian nursing homes. https://www.carthagea.fr/  In fact it is hotel rooms with a caregiver assigned for the whole day. The advantage is the residents are not in a closed environment. They can go out when they want with this caregiver. It is adapted to their rythme. You can also visit them, staying in the hotel, as for holidays. In fact it looks like holidays. We can try it but the respite stay is 1 month minimum. 

I will provoke a meeting with his two sons to have their opinion on Tunisia. It is quite far, so they could reject this solution. I was thinking to propose to their traveling expenses if they want to visit their father.

Here the waiting list for memory care is at least 4 months and the one I visited want a short stay before. 

I would still have the plan C if they have places. They often have because they are very expensive.

So many uncertainties everywhere... this doesn’t help !

Stuck in the middle

French, you are correct.  A temporary placement is needed, as soon as possible.  If you place him now, you will be better able to deal with any problems than if you wait until you are leaving for foreign travel.  You are one of the "wonderful caregivers" and it is in his best interest that you act now.

I retired to care for my wife.  I was 72 years old.  You are 49, young enough to be my daughter.  Our situations are not remotely comparable.

aod326

French, as you can see, we're unanimous that you're not being selfish in any way. My situation had some similarities to yours in that my husband was young - 59 - and I was (am) working FT in a job I love. I also routinely set time goals, such as "I may need to place him in December", which is what I said last year.  I ended up having to place him in August, and it would have needed to be sooner if not for wfh due to COVID.

I have a couple of things to add. First, whatever solution you pick doesn't have to be permanent. (At least that's the case in the US - maybe you have to commit in France?) You could, for example, pick Option C while you wait for Option A to be available.

Second, from what I've seen in previous posts, his sons are not engaged or helpful. Soooo, they do not get a say in whether or not you select the Tunisia option!!! You need to stand firm on that! It would be lovely if we could always reach a harmonious consensus, but sadly that rarely seems to happen. I don't think you're married, and I don't know the legal situation in France. But if it's the case that you legally need their agreement then I think you have to be extreme and tell them in that case you won't be staying with him. I know how harsh that feels, because you love him and want the best for him. But, in my book no support given = no opinions listened to.

This is a very tough time. We're here to listen and help if we can.

French

Yes aod326, 2 very interesting points. 

I hadn’t imagined that we can begin with a less good solution, waiting for a better one. It is also possible here. So I mustn’t neglect my plan C.

Yesterday l spoke to one of his sons about Tunisia. He isn’t against. I think that as long as I do everything l they don’t really care. They trust me. And they would have a good reason not to visit him if it’s far. 

I don’t need their agreement I have a kind of POA. In fact I haven’t activated it for the moment but I have asked an appointment with the neurologist to obtain the necessary documents. I hope it won’t be too long.

Buggsroo

Hi French,

I work part time and frankly it is a life saver. 

Sometimes my husband tells me to quit my job, never. I need the cerebral stimulation, the interplay with others.

Your job is important to you. Your son sounds like a sensitive young man. Your husband is proud of you when he is lucid. It is very hard to be everything to everybody, you have to put yourself first in order to be able to take care of those in your life. 

I wish you the best and hope that whatever decision you make will give you peace.

ElaineD

Hi French,  I know France is very advanced in providing quality health services.  My son has lived in France since 1985, he's now a French (and US) citizen.

Here in the US we have and concept of Assisted Living.  In our community may with serious dementia, but not quite ready for Memory Care can be place in Assisted Living.  Most other residents in AL have serious physical difficulties, but many are in what very severe memory problems and need a protective environment.

The idea of the small group placement in a home setting sounds like a good solution if you can manage it.

This won't ever be easy, but you need him to safe and well cared for.  The benefits of placing him when you feel comfortable with his care, and you can visit him.

French, even if I were able to be a full time caretaker until the very end of our journey, I could not do it.  I don't have the temperament for it.  I am, however, almost totally physically disabled, so there is no question that I cannot provide care for my DH once his behavior is disruptive or there is any need for managing wandering and I could not distract or redirect him in any way.  I certainly I cannot help with dressing and toileting.  I cannot change bedding, for example.

We have only a 1 bedroom apartment in Independent Living so there isn't a place for a full-time caretaker.  Our Assisted Living facility is across the parking lot from our Independent Living home.  We do have a form of insurance that will supplement our income once my DH is placed in care, or even if we paid for the help at home (once he meets the medical requirements).

You will find a solution or the beginning stage of transition, French.  We are so delighted that you have shared with us.

Love, Elaine