I'm ranting... this may be too much to read but... should I send this to my daughter?

LauraCD

We only had the official diagnosis of Alzheimer's on May 31st. Since then we let all three of our adult children know, my DH's sister and husband, and a select number of DH's closest friends. I was hoping from the family that they would appreciate the seriousness of what is happening but it seems they are not. Maybe because it is too hard to but it's disappointing and heartbreaking.

I'm at the beginning aren't I and I'm already experiencing an overwhelming feeling of doing this all alone. I thought the family would rally but they are not. Is this how it is?

I am about to send this to my daughter, who hasn't really been calling since we informed her, after overhearing her tell my DH that "You know how mom operates - she overreacts. Of course you should still drive while you can. You need to talk with some specialists before you make any decisions. You need to maintain your independence and build your own self-confidence while you can."

I'm changing names to protect the innocent:

Christine,

You simply do not know what I have seen living with your father, nor do you know who I've talked with ("specialists" or the research information and support I've received from the Alzheimer's Association and another organization that is huge in Manhattan called "Caring Kind," or yet another organization -- with an individual who himself has diminished memory who hosts groups that I'm trying to get your dad involved with who also mentors people with MCI. I'm working with your dad's own therapist in the background to support him. You do not know about the new visits I've set up for him: a 4th neurologist (he's seen 3 over the last three years), a geriatric doctor who specializes in Alzheimers's and a new psychiatrist to manage his meds that he certainly needs for depression, and crippling anxiety. And you haven't seen the results of the latest testing that confirmed his diagnosis and indicates how poor his comprehension, reaction, perception, overall judgement is. Nor have you witnessed his episodes of pure and unsettling paranoia episodes that I've seen at 4:00 in the mornings.

By example: Do you know he can't count? He can't understand his own writing. It's much more than memory loss, it's brain function.

This disease is real and it's really happening to your father. I'm not overreacting or "catastrophyzing" it. I live it, I see it. I see bits of him leaving every single day. I see him unable to do what he used to take such pride in (numbers, anything financial, etc.).

I'm trying to manage what I can. I'm trying to be prepared while keeping his own worries down. I'm taking over everything he used to do while trying to maintain his dignity (paying bills -- he forgets to or overpays). Our financial portfolio is something I have to take over as well. I'm in the process of getting a Durable Power of Attorney while he has the legal capacity to understand what we're doing so I can protect what we have. In addition, I have to (and every -- every group, organization, specialist says it's a priority to put financial, legal and healthcare things in order BEFORE anything gets worse for him). So I'm seeing an attorney who specializes in Eldercare and Medicaid in order to protect what monies we have if I can. Medicare does not pay for much of what we may require (e.g, home health care) in the future as Alzeheimer's progresses. This will impact what savings we have for "retirement."

I am not "overreacting" about this. Driving, with Alzheimer's, as an example, is not simply getting lost. It is a diminishment of judgement and reaction. He has not demonstrated that when driving yet but I can see the simple things he can no longer do at home which I can list for you if you want. Yes, he seems able to drive now but what will be the indicator of when he should no longer be? An accident?

And he is depressed and lonely and scared and as much as I try, as much as I want to I can't fix that. I love him so much but that isn't enough.

Your aunt calls occasionally and talks about her own chronic medical problems rather than talking to him about him. Your brother does call often but hasn't been up with Dylan (grandson) since Father's Day. That was great since that was the very first time in years they've been to visit even if they only live 90 minutes away. Your sister and your dad seem to be back at an uncomfortable place. I actually thought with your dad's diagnosis she was stepping up. No, that seems to have fallen back to the same old, same old. And he hasn't really heard from you.

Im afraid that by the time you all realize the seriousness of all that is ACTUALLY HAPPENING it will be TOO LATE to spend good quality time with your father. So try to understand my "overreaction." Please.

Jeanne C.

Laura, I'm sorry you're dealing with this. Family is tough, especially when they aren't living the day-to-day of it. I've been having some rough times with my husband's siblings - I can totally empathize.

First, you are 100 percent right that you need to be proactive around legal, medical, and safety issues. Everything you are doing is to protect your husband and yourself.

About your letter, I think it's a good letter and I hope it helps. I would take out the part about other family members and keep it to just what "Christine" can control. And, as someone who manages brand messaging for a living, I suggest rewriting the 4th paragraph about what you're TRYING to do so it's clear that this IS what you're doing. You have been doing a great job taking care of the two of you and these things are what you're doing to make everything go as well as possible. Maybe invite your daughter to learn more about Alzheimer's and caregiving. If you feel it's appropriate, ask her to partner with you to do what's best for your DH. And remember that her reaction is hers - you can talk to her about it but in the end you can't force her. I truly hope she comes around.

Hang in there. You're doing the best you can and that's pretty darn good.

I hope some others will chime in because I'm positive that many have had similar situations.

Ed1937

"Yes, he seems able to drive now but what will be the indicator of when he should no longer be? An accident?" Maybe "an accident that causes us to lose everything we have?"

Jeanne gave you an outstanding reply. I agree that you should keep it to only the things she has control over. She can't control what her siblings feel or do, but maybe she'll talk to them about it after reading your message. I'm sorry the family doesn't seem to be supportive. Unfortunately this is not uncommon.

The fact that you wrote such a detailed message to your daughter should open her eyes. It sounds like she and others need to be educated about what caregiving is really like.

jfkoc

I would not send that letter. I would thank her for her concern and pledge to keep her updated as things progress. I would then slowly inform her of her father's progression. Occasionally send her "generic but relavant information".

Do let her know what all you are doing.

I would always end with a thank you for her continueing support of both you and your husband. You really want her on your team!!!

Judith

M1

Discretion being the better part of valor, I would also sit on it for a while. I have written many letters to family members that I haven’t sent. Some advice I remember regarding method is to state what the family member has or has not done (omission or commission), how it made you feel—this is important since feelings cannot be argued with-and then clearly state what you do or do not want them to do in the future. So for example, “Christine, when you tell Dad that I overreact, it makes me feel undermined and unsupported. I don’t think you understand the extent of his disease. I know this is very sad for you, but I am the one seeing the day to day impact and having to shoulder 24/7 care. In the future, I want you to…..”

Iris L.

Yes, you are alone.

I was in your daughter's position many years ago with my mom who had cancer. I had told her that all I wanted for Christmas was a Christmas card, and that she could just walk to the corner drug store and buy me a simple card. When I flew in from out-of-town, I saw immediately that my poor mom was in no shape to walk anywhere. In fact, she was too frail to walk from her bedroom to the bathroom. I felt so ashamed, that I had put my mom through such anxiety, thinking about a Christmas card. I vowed right then to myself that I would do whatever I could do to make my mom's last days easier.

Personally, I would not send a letter. I would let her see for herself! Get her to come visit and spend some hours alone with him. When she sees for herself what condition her dad is in, then you can tell her all you have done to keep your family ship afloat. Then see if she will step up and offer to help.

Iris

ButterflyWings

I think this is an excellent letter -- for your eyes only. Very clear outlining of what you feel and the reality of dementia. M1's suggestions are outstanding, and I will remember that format.

I agree with those who would NOT send it.

It is possible it would be shared with or read to your DH, only backfiring. Do get the DPOA etc in place immediately before he balks or is convinced to assign your DD that role since she is pledging his independence. That would put you in a real pickle, having responsibility but no authority for your DH's person and finances, especially with the rest of family being either detached, or not in agreement with you. Iris's suggestion for DD to visit after that, and see for herself, is a good one.

Denise1847

Dear Laura,

I would not send the letter and definitely not tell anyone about the DPOA. You never know what others will do that could undermine what you need to do. We all are experiencing similar reactions from family and friends like denial, avoidance, judgment etc. You have enough on you as it is. I know you are trying to get through to your daughter, but she is an adult and needs to make her own choices in her own time. One of the first stages of grief is denial, and that may be where she is right now.

I get that you want her to fully appreciate your efforts, the difficulty, the progression, but consider focusing on keeping your sanity. You cannot fix her reactions any more than you can fix your husband's disease. It is critical for your own survival to learn to let some things go. My mantras include: "what does it matter" and "one day at a time." Family and friends will never fully understand the depths of the suffering that caregivers go through seeing their loved ones decline day by day.

Laura, you are doing a great job. I am so sorry that you are having to go through this. The people on this forum are fantastic and will give you great wisdom during this journey.

God bless you in your struggles.

FAHNJL

Do what you want, but I wouldn't. What I have done, before and after diagnosis, is to send emails to my children and their spouses, stating matter-of-factly the results of doctors visits, lab/test results, and upcoming medical and therapeutic activities. I keep it to the facts and unemotional as possible. I'm letting them process it in their own ways. I don't get into 'how Mom's doing today' or her latest forgetful episode. If they want that they can always come over and see for themselves. I don't want emotional family huddles. That just leads to spur of the moment promises that get forgotten. What I want is to sit on the couch and eat ice cream and hold hands and watch TV with her. I'm focused on doing whatever will make her happy while she still can have happiness.

Quilting brings calm

I would not send the letter. I would get all your legal things done before involving your offspring further. What you could do is buy copies of the book ‘The 36 hour day’ and have them sent to each of your offspring. There is a free document floating around on the internet called ‘Understanding the Dementia Experience’. I’m not sure which link to it actually works these days. Someone will post it in a comment. Send that to them.

When she brings up the driving. Just tell her the doctor said no driving and that if he drives against doctor’s advice, the insurance isn’t valid

There is something worse than them not helping… that would be actively undermining you.

ButterflyWings

Here is the link to the article Quilting mentioned. It really is excellent. Smashwords – Understanding the Dementia Experience - A book by Jennifer Ghent-Fuller - page 1

LauraCD

Thank you all for your thoughtful answers.

Jo C.

I am sorry for all the lack of support and disbelief; it is so difficult to have that in the mix and to have a Loved One (LO) even telling the affected spouse incorrect information and direction. However; that being said, that is not unusual in the beginning until our LOs can actually experience the changes themselves.

What a stunning shock this all must be for you; such changes in life that was not seen coming and that has many concerns along with it. Early days are difficult from many different angles both practical and also catastrophyizing into the future for dynamics that may actually not happen. That is normal and part of the process as we find ourselves thrust into the great unexpected.

As to the letter; if it were me I would consider it a way that I vented my feelings and NOT send it; just destroy it. You will want to keep as good a relationship as you can with the adult children; they will eventually catch up in their own time as things become far more evident. I am sorry for your disappointment; that must be very hurtful.

With my brother, no way would he believe that our mother had an issue. He lived a bit away but made VERY short visits and she thought of him as the be all and end all. He actually thought it was a problem that I was having as she was able to "showboat" for short periods with his short visits despite having a behavioral variant of FrontoTemporal Dementia.

I did begin to send him copies of the doctor's reports and test results that spelled things out very clearly but never added any personal info. He still did not believe there was an issue.

Then . . . one day, he and his wife visited for Mother's Day; we each had a gift for Mom. BUT she went ballistic and began to behave in a horrible manner which included yelling and carrying on. Brother and SIL went outside - when I stepped out he said, "What the hell was THAT?" I did not say much except, "Welcome to my world." You situation will not be as dramatic, but sometimes it takes actually witnessing the changes to have a LO begin to believe and often, a LO initially deals with denial rather than to feel brokenhearted over what is actually happening in reality.

In the meantime, get all your legal ducks in a row without adding additional people; keep it simple. With tincture of time all will become evident.

And also, feeling put out because no one is offering to help; do not let that come between the other LOs and yourself. That too is not unusual, I decided to think of myself as an only child rather than let upset and rancor to grow because I was doing it all myself. Eventually, we learn to put structure and routine into the days as it is not only simpler for ourselves, but that is the best setting for a person with dementia. Routine and structure without complex issues. Learning to let go was one of the more difficult lessons I had to learn and when I finally did, it took a huge burden off my shoulders.

Hang in there , read the items recommended above, and know that it will be able to be managed. Not all persons with dementia have a dreadful process; some actually have a far lesser difficult journey. My Step-dad had a bout 20 years and when he passed in his 90's, he still could toilet, bathe, dress, eat by himself, and was a dear person; he did have a terrible short term memory but it was not as bad as it could have been. Other LOs did not have that experience, so what you read here is not always what happens to everyone; it is all over the board as far as what one's journey will be.

You will find great support and experiential wisdom here that can be so helpful. Let us know how you are doing, we care.

J.

Ed1937

"so what you read here is not always what happens to everyone; it is all over the board as far as what one's journey will be." I think this is an important point. Much of what you read may never happen for you. While it may be good to know of the possibilities, dwelling of what could happen will not serve you well. Take things as they come, and don't stress about the future. If and when you have circumstances you need support or advice for, just start a new discussion. Not every solution to a particular problem will work for everyone, but every solution will work for someone.

mommyandme (m&m)

I was in denial about my moms diagnosis. Before mom got herself diagnosed I said things to her like “we all have those problems”. “Don’t worry about it”. I stayed in some sort of denial even when I became her primary caregiver. “Accepting and Adjusting” to this disease and its reality takes a lot of experience. When our caregiving duties overwhelm, which is often, we definitely need and want support, especially from those that we love and love us. Right now, I’d take a step back from trying to bring them up to speed with written or spoken information. Let them come and experience what they can with a visit. You DO NOT need to defend yourself or justify. I wouldn’t send the letter but I’d probably send her (them) some of the mentioned material that hopefully they’ll read.

Get the legalities taken care of soon and focus on you and your husband. Try to “disconnect with love” from the kids who are in denial for a bit. Take a breath and just “be” for a few, if you can.

Im so very sorry for this heartache.

LauraCD

Everyone has been so very helpful and the fact that you all speak from experience is so valuable. Yes, I am embarrassed to admit that i found myself cracking at this early stage. I want to be prepared. I feel like I can't do anything else until I do get all in order (legal, financial, health). I thought I was doing the best I could but somehow I lost sight of the fact that everyone -- especially those who love him -- will have their own reactions to this dreadful development. Your advice has helped me to try to put some of this in some working perspective. Thank you.

M1

Don't worry about "cracking," Laura. We all do. Fortunately this is a safe place to crack :). The burdens are very, very difficult and it doesn't matter what stage of the journey you're in. We all have to ask for help and pick each other up at times.

I do think dealing with any disease is a process. There's always "shock and awe" early on, and steep learning curves, not to mention grief and sadness and loss, anger--all of the stages of grief that Kubler Ross described about death so many years ago.

Jeff86

I incline with the majority. It’s a fine letter for clarifying your very understandable feelings. So it served a purpose. But I would not send it.

Among the harsh early lessons for most of us on an AD journey is the discovery that not all family members and close friends are able to go on the journey with us. The reasons are various: it’s too hard, it’s too scary, it’s too threatening. It may manifest itself as denial, as anger, as indifference, as withdrawal.

When I experienced this, I was, initially, deeply disappointed. And in some instances hurt, maybe even angry. But I came to feel some sympathy with those who for whatever reason can’t make the journey. More than that, I decided to focus on and be grateful for those who are with me and my DW. And not to waste energy on negative feelings.

Hopefully, your daughter will come around as the reality of his disease becomes undeniable. Meanwhile, less is more. You’re on the right track, getting legal and financial affairs in order and building the care team that will support you both.

AlzWife2023

I agree that this letter is more for you and not your daughter. I don’t think you should send it. People need to come to their own understandings and offer what they can. If one of your children or another family member asks: what can I do? How can I help? that’s the time to request practical help. It seems that now this burden is on you. You will make all the decisions about his care and your future, not them. Maybe your children will develop a better understanding and be more helpful with more information. You could send them some good links about your husband’s symptoms. You should not have to convince them that he has Alzheimer’s. It’s a fact. They may be scared and in denial. Knowledge is power. Look for a support group and maybe a counselor so you can talk to people who know what you’re going through and who are on your side. Good luck! We’re all going through the same hell and we’re here for each other on this site.

harshedbuzz

I hope writing this was therapeutic; I find these things to be but I would not send them. I am not a fan of writing missives in lieu of actual face-to-face discussion with close relations. I don't put anything in writing. In trying to understand the dynamics of this situation, is she one of those adult women who self-identifies as "Daddy's girl"? Was she the young girl growing up who butted heads with mom?

I'm wondering if there's hope your DD comes around or if this is just a situation where she isn't ever going to have your back. My dad had a brother who was a thorn in my side during dad's illness. My dad had been unpleasant and unfiltered in the early stages of dementia-- so much so that my uncle 1) hadn't seen dad in years and 2) I overheard him telling a fellow member of the golf club to which they both belonged that dad was "his much older, half-brother" insinuating they weren't close which would have crushed dad. Fortunately, he didn't question my mom about her choices, but I got several phone calls judging and ascribing unkind motives. He wasn't ever going to be part of our team; I was disappointed but knowing that made planning easier.

Regarding the driving. Have you asked your insurance agent if his policy covers him with a diagnosis of Alzheimer's in his medical record? Have any of his doctors said he shouldn't drive meaning he would be driving AMA? Either scenario would render you destitute in an accident if he were sued keeping in mind that by the time his trial was set, he will be considerably more impaired as a result of the disease progression. As a spouse and/or POA you could also be held liable for any accident he might have if he shouldn't be driving. Assuming the above it true, I would gently explain this to your daughter as a non-negotiable.

The earlier stages were a lot harder for me. YMMV. Getting the legal pieces in place and dealing with taking over the aspects of my parents' lives dad managed in the context of his decline and agitation over every little thing was way more difficult than later when he had less cognition to recall his anger and fight.

HB

CStrope

I agree with harshedbuzz, if he were to get in even a small fender bender, the fact that he now has a diagnosis of MCI or Alz would immediately play into the equation. Even if it wasn't his fault, the others involved could easily use his diagnosis against you. The reality of that is what made my husband understand he needed to stop driving.

AlzWife2023

Re: cracking

I cracked up hard at the beginning. I think it’s normal. It’s the hardest part in a way because you’re letting go of the person you love while also taking on an enormous responsibility as their caregiver. Your life is changing in every way & it’s getting harder. Everyone says go slow, remember you’re in charge, accept all offers of help, take care of yourself & cut yourself some slack. All good advice that I’ve received & try to follow.

I’ve also not gotten all the paperwork together. I think I’ve been putting it off until I was psychologically ready.

Gig Harbor

I am in a definite minority but I think part of your letter should be sent. I would leave out the part about the DPOA and about other relatives and what they do. This will be a wake up call to your daughter but she does need to see where he is right now. If he can showtime and she only visits every few months it may be quite awhile before she sees his disabilities and by then she will have lost valuable time with him. She needs to understand that this time is disappearing. She likely has friends with parents who have dementia and your letter may prompt her to talk with them. Once my daughter told people about her dad’s dementia they opened up to her about their family struggles. If he had terminal lung cancer she would want to know and would likely be angry if you didn’t let her know how serious his illness was. I would treat his dementia the same way. I think your letter states your position beautifully. You might also state that if he is in an accident and kills and or injures people the ensuing lawsuits may bankrupt you both because of his dementia diagnosis. I was very upfront with my daughter and she was able to handle it. It also helped that she saw her dad every 4-6 weeks and could see a continuous decline. Good luck.

CorrieG

While I agree about not sending the letter, I would still tell my daughter that I felt hurt and belittled by the comment about catastrophizing. How she feels about her dad’s capacity is one thing but discounting your opinion is hurtful on its own.

It was a beautifully written letter though and I felt you hurt so clearly. I think I would feel apologetic and appalled if I got it from my mother even if I didn’t agree with her opinion.

SDianeL

I would change the letter and just send a list of all his memory issues and behavior almost like a doctor's report. Attach any documentation you need to. Just all the facts ma'am. Then tell her firmly at the end to not to speak to him about it because she is not helping. To get him to stop driving, have the doctor tell him. Worked for my DH. He was diagnosed 2 years ago and the Neuro Psychologist that did the 3 hour test said he has visuospatial issues and should NOT be driving a car. The only thing I noticed was that he was driving very slowly and before that he was a speed demon. She said he couldn't judge distance, speed, space, time. She said if he were in an accident with his diagnosis on his medical record that we could be sued and lose everything. I explained that to my DH and he reluctantly agreed to give me the keys. I am the step mother caregiver for my DH. His daughter lives in another state. From the start I have been updating her weekly with details about his behavior. She cries when I give her updates but I want her to understand completely each phase. It's not cruel, it's necessary. She came to visit this week and said she appreciated what I was doing and said she didn't see how I did it. She said she loved me.

Lgb35

I am in the same boat! We are early in the process and I see the memory lapses and the struggle with word finding on a daily basis. My DH is still working and driving but working is getting harder due to his memory issues. I have two kids both in mid 20s. One lives out of state (we are currently visiting for a week) of course DH is not “showing” his issues to our son. I did show our son a picture of the MRI but at this point it is hard for our boys to understand this is real, progressive and terminal. My DH tells me often that he is not going to make it to the end stages that he is going to end things when he feels he is “too far gone”. I don’t know what that looks like in his eyes. I am not sure which is worse having him take his life early or watching him become totally unattached to the world around him. Another thing with our boys is it is very hard at a younger age to accept a parent might not be there long term. My dad passed of cancer 10 years ago. I asked the doctor the prognosis and he said it was terminal and we had 1-2 years. We actually had 10 months. Nobody in the family would accept the reality of what was happening but me. I was able to have honest conversations with my dad which allowed him to share some negative feelings he was having. He could not share the pain he was in or the depression he felt with anyone else because they could not handle it. The kids will eventually understand but all we can do is pray they understand in time to make those Connections before it’s too late🙏🏼. We can continue to update our kids but until they start experiencing it, they are going to struggle accepting their parent is fading and will be gone at some point.