Early Onset Advice?
This is my very first post and I have a tendency to be verbose, so, sorry for that if you are in a hurry to get to my point. Pretty much all of it is my point. I'm hoping someone will recognize a pattern in all these details and have some targeted advice for me. I'm going down with MDW at this point and it is getting ugly.
MDW is 58 and she has an appointment to get a spinal tap in March. I assume that is to confirm the type of dementia. We all know she has it and it is progressing quickly. She has symptoms matching moderate dementia due to Alzheimer's disease.
January - June 2022: She started having problems at work, made mistakes, got wrote up.
June 2022: She caught COVID - She went on medical leave.
July 2022: She complained of "brain fog" to her primary care provider. At this point we thought she had "long COVID". She went on long term medical leave.
October 2022: She quit her job after her medical leave ran out.
May 2023: She had her first traffic accident. I noticed her facial expressions were different and she talked and acted differently. I asked her what was going on and she said, "I don't know" and we both cried.
July 2023: Two more traffic accidents. My son, her mom and I took her car keys. It was one of the worse days of my life.
July 2023: I took her to the emergency room because she kept falling, dropping things, behaving oddly. She received an MRI, CAT scan and blood tests. Nothing definitive was found.
September 2023: She took neuropsychological tests.
October 2023: She nearly died from a bleeding ulcer. She was in the hospital 8 days and had 3 surgical procedures to save her life. She has recovered well though.
December 2023: We received the neuropsychological report with a diagnosis of
G31.09 Probable Frontotemporal Degeneration (FTDbv)
G30.9 Possible Alzheimer’s disease (Rule In/Out)
G31.83 Possible Lewy body disease (Rule In/Out)
F02.81 Major Neurocognitive Disorder Due to Multiple Etiologies, moderate with behavior disturbance
December 2023: Her behaviors ranged from violent, to obsessed with calling her doctors and people at all times of the day and night. She tried to cancel important medical appointments and apply for financial assistance online. We had to take her cell phone and child lock her tablet. Another bad day.
Since the testing in September her condition progressed from mild to moderate, in my opinion. I'm falling apart and her family has made my situation worse. I will be seeing a therapist tomorrow because at Christmas we had a suicide in the family and I'm dealing with all this listed above, and I'm about to crack. Ultimately, I just want to help MDW be happy and comfortable. We are talking about going out RVing as soon as the weather improves. I hope going out like that is good for her. I think it would be?
Comments
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I’m not familiar with early onset, I just wanted to at least offer my sincere hope that answers/ideas come your way.
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Welcome to the forum. You clearly have a lot to deal with and I'm sorry. She is obviously progressing quickly. Hard to know if RV'ing is still possible or not. People with dementia usually do better in a stable environment and change can be confusing. There are a number of old posts you could look up about traveling. That said, early advice to new posters always includes doing whatever bucket list activities that you can, and being sure your legal affairs are in order. If you don't already hold power of attorney for hed, you need to get that done.
Have you told her docs about the erratic behavior? Medication may help.
I wish you well. It's a tough road, the therapist is a great idea.
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My DH also has early onset of something, still no solid diagnosis of any particular dementia, so I went through him causing issues at work, being unable to complete assignments, etc. A few things that are similar to your situation. - 1) he is in his late 50's also; 2) any illness or infection makes his cognitive status deteriorate and it may or may not return to baseline when he feels better; 3) we want to travel too but I'm not sure it's a good idea any more. During my DH's last hospitalization I hired a care manager to have him evaluated for assisted living and she told me that early onset usually (but not always) progresses quicker than getting dementia when older.
I took a trip with DH in November and after 3 days there he no longer wanted to leave our room to do anything. I think he found it was too overwhelming to be somewhere other than home and be around a lot of new people. We had been to the exact same place the previous May and he was able to enjoy that vacation. We are supposed to go on a cruise in a few months and I am seriously considering cancelling the trip because I am not sure how he would handle overseas travel even though he says he wants to go on the cruise. Based on what you posted I think travel might be very difficult for your DW.
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Thank you for the helpful advice. Yes, she is on a long list of meds including one for depression and anxiety and another for sleep. The violent behavior occurred when we ran out of her depression and anxiety meds for a few days. She calmed down considerably after I was able to get her meds again.
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Dear husband12,
Ive been caring for my husband full time for almost 6 years and he has had memory impairment for probably 10 years. I currently direct practically everything he does. We have made many RV trips together since the 90s. I recognized that if I wanted to continue this lifestyle I would need to take over everything; planning, prepping, driving, tow hook up, navigating and mechanical troubleshooting. I’ve managed four 5 week trips of about 3600 plus miles in the past 5 years. Last year I didn’t take the rig out, but I may try another trip this year.
The things I learned doing this all on my own are:
- Never trust your spouse to help with very much. I did major damage to the side of the rig when I trusted his input as to if I had enough clearance when pulling into a gas station. I have a 40 foot diesel rig and I tow my Jeep so it is not easy.
- It is very challenging to be both driver and navigator.
- Most trips involved some kind of mechanical breakdown, hydraulics, fuel pump, water pump, wind damage to slide outs, etc. I discovered my DH hadn’t had much maintenance done in the past so I dealt with the repercussions. It was frustrating to not have anyone to bounce questions off to get a second opinion. It’s all up to you.
- Your LO with dementia may have trouble using public restrooms if there are codes to get in. I was outside with the dogs and I finally asked someone to help him.
- My husband no longer recognizes our home as where he lives much of the time, and sometimes thinks we’re in the RV. He has similar issues when traveling in the RV. As long as I am nearby, I am his anchor. However, he doesn’t always recognize me as his wife. I could be his sister, his mom, his cousin or some cute 35 year old brunette (which I am not).
I’m hoping to downsize to a much smaller RV at some time soon because it can be overwhelming to do these trips . They can be stressful and not as enjoyable for me. Once I’m parked for a few weeks, only then can I take a big breath and relax.
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Welcome, hello, and sorry you and your wife are going through this.
My husband was diagnosed with FTDbv about a year ago at 65. I'm sorry to say your story sounds similar to ours. Some highlights of our trip: he started losing interest in things and didn't seek a new job when we moved back East 15 years ago. He started becoming argumentative and just plain mean at times. Also a big dose of paranoia and obsession/hoarding. In 2020 my former CPA husband couldn't finish our taxes and I had to take over. 2022, I started noticing confusion and memory issues. During the move to our new house all hell broke loose (3 police interventions, 2 hospitalizations, lots of anger and anxiety). Once we had a diagnosis and appropriate meds, things became more manageable, but it has been rough and seems to be progressing fast.
You may want to talk to her doctor about an atypical antipsychotic if she's having obsession, paranoia, delusions, etc.
This forum has been a lifeline for me. The people here are glad to listen and offer advice based on real experience.
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Please speak with a CELA as soon as possible. www.nelf.org I wonder if there is any possibility to recover possible work/retirement benefits despite her resigning since she clearly was not cognitively able to make a good decision at that time. Dementia is a very expensive disease (understatement) and now is the time to be sure your DW receives everything she might be entitled to.
Also, though my DH was not early onset (meaning younger when dementia strikes), due to our significant age difference I became a spouse caregiver in my mid-to late 50s. So, like you, some of my best years are now a horror story and I am so thankful for this forum which is the best, most knowledgeable resource that exists. FYI, my DH's neuropsych directed us here on diagnosis. Best thing he ever did, aside from prescribing Seroquel to quel the hallucinations and delusions that are part of this journey.
It is a terrible feeling to become an Alzheimer's widow/widower at any age, but late 50s-early 60s is especially sobering, unexpected, and heart-wrenching. Buckle up. And keep posting here. There is lots of wisdom, freely shared. I'm so sorry for you and your LO.
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My wife was diagnosed with early onset Alzheimer's in 2015, she was 62 tears old. It has been a slow steady decline but is getting faster. She had always wanted to travel and did a lot but last year I finally had to retire to care for her. Since she wanted to go RV'ing I rented a motor home for a week to see how it went before buying anything. She traveled fine but when we stopped anywhere she didn't want to do anything and one evening she started to walk out. When I asked her where she was going she said home. We returned the motor home 2 days early and learned that it was not going to work for us. Shje still liked the idea of travel just not actually doing it. Now she doesn't want to go anywhere out to eat the store or to visit our kids.
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Thank you for sharing. Yes, I agree I cannot count on her. I asked her to move the motorhome five feet at the gas station and she shut it off in drive and it rolled away and smashed a pole and totaled it. I do plan to go to one place and park for at least 1 month. I'm also going to snow-bird park with a pool and club house with bingo and cards. I think it will work out this year, but who knows next.
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Yes, thank you for that medication suggestion. I will ask her Dr.
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Yes, thank you for the link. MDW has a disability claim in now. We might get it and if we do, we should stay afloat and have access to more care.
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@husband12 it is most urgent that you please not let her drive. Ever again. Thank goodness she was not injured, and that it was a pole - not a person -- that she ran over with the motorhome.
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The last trip I took with my husband was with another couple. He needed watching because he could get lost coming out of a public restroom if I was not outside the door watching for him. He had lost all sense of direction and had no awareness of his surroundings. I realized that if I had gotten sick on that trip my friends would have been tasked with watching him and I couldn’t ask them to ever do that. If I had to go to the hospital the staff there would not have been able to give him a 1:1 sitter as he was not the patient and he would have wandered away and gotten lost. The stress of a trip outweighed the benefits. Now that he has passed away I am free to travel. I just wish he could have taken some of the trips with me.
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The diagnosis of the cause of dementia involves the elimination of possible causes. Here are some links which might be helpful
Why is a lumbar puncture used in dementia? - Alzheimer's Research UK (alzheimersresearchuk.org)
Young-onset Alzheimer's: When symptoms begin before age 65 - Mayo Clinic
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My dh was diagnosed at 58 and retired suddenly the same month. The following year we took a cruise he had planned for March 2020, and had been looking forward to for years. The cruise went well, but it was more like caregiving than a vacation for me. He had a great time, and I had an ok time.
He couldn't handle dining in the main dining rooms, because he couldn't manage the uncommon terms on the menu or the slow multicourse service. I had to stick with him at all times. I could leave the cabin if he was asleep, but the one time he left the cabin without me, he got lost.
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Husband12- What a nightmare you and your wife are going through! Did your wife’s doctors’ run tests for all the illnesses that mock dementia?
There are medications that a behavioral specialist (gerontology) might prescribe to alleviate some of her symptoms.
”Strokes, depression, alcoholism, infections, hormone disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.”
https://www.alz.org/media/documents/inbrief-differentiating-dementias.pdf
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I'm so sorry @husband12 early onset is a bear. My sister was diagnosed with it at age 59 (she's 64 now). She has Alzheimer's and Frontotemporal dementia. It can progress blindingly fast. So yeah, get all the legal ducks in a row.
I agree completely with @ButterflyWings - take the car keys away. Make them disappear. I generally agree with everything that others have posted as well.
As far as trips go ... if there's some place the two of you really want to visit, I'd do it as soon as possible. Peggy (my sister) wanted to go to Italy, that was her bucket list item. We made it happen, but we did it as a cruise so that she'd go back to the same room every night. I left nothing to chance on that trip. Even so, I agree with @sandwichone123 it was no vacation for me and significant other. Peggy loved the trip though and it made her so happy. So, in spite of the work and hardships, if I had to do it all over again, I would. As I look back, I'm not sure we could have done that trip if we had waited even six months down the road.
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Yes thank you. The MRI, cat scan, blood tests and lifestyle rule out most of that. I assume the spinal tap will tell once and for all just what type of dementia it is. I've had to care for my grandfather when he had Alzheimer's and her behavior is very similar.
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Thank you. I will visit those sites.
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My HWD/Alz had the spinal lumbar puncture and his results were the pathology was consistent with Alzheimer’s . It can also rule out other culprits. My husband did well during the spinal /lumbar procedure and I am really glad it was completed. Best wishes to you and your loved one
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Thank you and best wishes to you and your loved one too. We finally met with a Neurologist this week. He is going to do a Frontotemporal dementia panel (genetic testing), EEG (brain scan) and has prescribed rivastigmine. Surprisingly he did not schedule the spinal tap yet.
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Best wishes to you and your sister and thank you for sharing. My situation sounds very similar to how yours was. She is still interested in going out in the RV with our three dogs. It will be a challenge, especially the stairs, but I think this summer will be the last chance we can consider it, given the rate of progression. I want some pictures of her doing more than sitting on the couch glued to her iPad...
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husband I hope you get to do the RV'ing. Re the iPad: it's worth noting to be careful about her internet access, you should probably monitor her browser history if she's actually getting online with it. Monitor her emails, she could easily respond to a scammer and you might not find out unless you are watching. I came home one time to find my partner on the telephone with "Microsoft" having just granted them access to her hard drive. That was the end of her computing days. If your wife is just playing games on it, that's another story, but the internet threat is very, very real.
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I'm glad to hear that you're making headway in testing and working toward a diagnosis. One note regarding rivastigmine, people with FTD should not take cholinesterase inhibitors as they tend to make symptoms worse, not better.
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Yes, this Dr. is taking a, let's try this and see what happens, approach. I'll keep a close eye on it.
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Yes, we had to take her cellphone for similar reasons. Now she has a child locked iPad with no Internet browser. It killed me to take the car keys, and it killed me again to take the cellphone. This is awful.
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I know, it's very hard. Probably harder on you though. Hopefully she'll be oblivious, if not now, soon. Small mercies. My partner has forgotten all of our personal history and most of our family and friends, but she has no sense of time. She told me yesterday she was not done building houses (her profession) and that as soon as she found her truck she was going to visit her mother in Texas (dead since 2001).
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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