Hello,New here. I have some experience with A&D, another family member had it and used to live with me. They passed on long ago, thankfully.
Now I find myself in the same position again with my husband. He's diagnosed with early onset. We have small children.
We have some assets, our home mostly. I'm extremely concerned about our future, the children and me. I'm worried about losing everything to long term care, how I'll afford to raise our children. They're excellent students, great kids, and have hopes and dreams of University, a long way off still. My husband is the main earner. I worked part time before they were born, since they came along I've been a stay at home Mom. I cannot work full time and adequately care for my children at this time. They have some medical issues too. For me to work full time, I would only work to pay someone else to care for my children, it would be a wash. I estimate if lucky I might earn $100 a week (after expenses), but the cost to my children with everything they are going through makes it not worth it to me. They're already showing emotional issues of the stress/strain of my husband's dementia and I have to literally be here for them. They are people, not objects or puppies and they look to me for stability. I'm trying to see if there is a way for me to earn some income on the computer while at home but honestly it is not very promising. I've considered crafting but I've no skills. I don't think it would provide much income. Crafting is also time consuming, something I don't have.
Husband is still functioning ok but having issues including a spending problem, we're getting in some debt. Because he's still functioning, I can't just cut off his credit cards yet. He is spending on things for himself & the kids because I think he's trying to get in as much living/experiences as he can. He wants kids to have memories of him.
Like many, I am feeling a lot of guilt, for things not my fault. I feel guilty for being healthy, my lack of patience, not supporting him enough, outliving, he won't see children grow up, putting children first. I realize my guilt is misplaced, however still there. I am doing my best right now, coming to terms.
I cry, for him, myself, our children. Worried that we'll fear for our safety from him in the future, at nights, just like before. I put safety above ALL else and I will NOT allow him to ever hurt our children or myself. He would NEVER do such a thing deliberately, he is a wonderful father & husband. Being bigger/stronger he could harm us due to dementia. From past experience, it's surprising how much strength a dementia patient, even elderly, can have.
We're not there yet, but I told my children if it should come to that (as it usually does without warning), I'll distract my husband and they should leave by a door and go outside, to safe spot, even out a window if necessary (we live on ground floor), call police if possible. I told them not to worry about me because I will distract and manage him and follow them once they are out and safe. I can't believe I had to tell them this & my heart hurts for doing so but their safety is and always will be my #1 priority. Feeling so guilty about this too.
I'm in a horrible situation. My only support are my own elderly parents. They do not have dementia. I am an only child. There is little they can do to help me but be there. I feel alone and worried all the time. I cannot allow this to overtake me and steal my health, physically or mentally. I have to be there for our children. It's just very very hard for me right now.
I am ashamed to say I prayed to God to take him quickly rather than allow this to drag out. If he is to die, I don't think our children and I could bear to watch him decline and suffer slowly. It's too much to bear.
Please, if anyone out there prays, we need your prayers. My family is in trouble. I am also praying for you, if you will accept my prayers and good thoughts. My heart is with you.
You husband currently does understand what he has and where it will lead and this is common with early onset. If you read Amy Bloom's book, In Love: a Memoir of Love and Loss, you will have a good guide as to early diagnosis, and her own discussions with her husband.
I would start by journaling and keeping daily diary. You need to organize your thought. You need to find in your area any support group you can; if none in your area you need to sign up for Facebook and go to support groups you can join. There will be good information there. First step is knowing what must be accomplished early.
1. get documentation from the doctor
2. Go to elder law attorney and do all wills, POA right away.
3. Hubby will not long be able to safely do the executive functioning of paying bills and handling money. From his spending it is clear that is close and must be addressed first.
You do not say what his job is but it is important he speak now with his bosses.
Try to stay in focus and know that right now the money goes to guidance in this. NOT to making the kids happy. The kids need a good education in what this all means, as you go.
Violence is rare in early onset Alzheimer's but early placement and early death is a fact of it, and there needs to be a division of finances to protect you and the children. Again that is attorney work.
So step one is a visit with an attorney for options how to proceed.
You WILL be on all the government programs for help that you CAN get. There is going to need to be disability. There is going to be some Social Security for the children with the loss of a breadwinner. You need to access all this knowledge.
I am so dreadfully sorry. I truly cannot imagine what all is on your plate, but it is honestly devastating. I wish you the very best of luck and I hope to heaven you have a strong support group. It is crucial. I am an atheist, but I can tell you right now that if I were an atheist in your place I would not be looking for GOD but for a church community group. If god came along with the bargain so be it. But you are going to need help and support in your future; that means community. I don't honestly know how one finds community these days. If there is a "The Village" in your area I would also go there and see if there is a way to trade some services for some help.
I wish you the best. And again, none faced with this can begin to imagine the pain and terror of what you're facing. Seek help from everyone and anyone. Start with his doctors and a good attorney.
Support to you.
1) Consider separating your finances. That protects your half of the marital assets, from both the costs of long term care and from bad decisions by your Husband. Joint ownership of the house should be able to be changed to tenants in common (the term where I am, also in the UK, and possibly Canada). This also protects your half share. It stops ‘losing everything to long term care’.
2) Consider asking you H to make a large gift to you from his half share of any other assets. In the USA, Medicaid has a 5 year look-back period that takes into account gifts as assets. If that applies to you, and H is at the beginning of a long deterioration, the gift may be protected by the time it matters.
3) Replace your H’s credit card with a debit card. That’s what I have, mine with a limit of $500, because I mislaid the other credit one (twice). It protects you and him from any increase in the ‘spending problem’, and is just the same to use. You check it and keep the balance up from the gift he has transferred to you.
4) Forget about craft as income. It’s a fill-in for people with time on their hands. We have a non-profit craft shop here, and the sale income is usually valued mostly to allow the crafters to buy more raw materials. With some extra income if possible!
5) Reconsider child care. Unless you have three children under 5 years, it is likely to be more helpful than you think, either now or in the future. (And if you have 3 children under 5 years, be very very careful about contraception!) My two were in child care as infants, both have university degrees, and very good careers.
6) Search around to find information about computer based work that can be done from home. There’s a lot of it about!
You have a very difficult situation, and more is coming, but you do need to use your ‘crying time’ to plan for future finances rather than worries. Lots of love, Margaret
PS My first baby was in child care aged 2 weeks, so that I could keep my part-time short-hours job doing month end accounts. In the lift, a four year old looked in the bassinet I was carrying, turned to his mother and said with satisfaction “that’s Jenny”. It shocked my socks off to realise that he knew her, not me at all.
Best of luck to you.