New Here - Lots of Questions
My partner and I are not married, we have been a committed couple for 25 years. He is 69 and I am 71.
He has admitted to me just this year that he is experiencing some short term memory issues. I noticed we went into a grocery store together and he went off to get his cereal and he got lost. When I found him the look on his face was that of a frightened child who was lost. We were on a cruise and he admitted he had trouble finding his way back to our cabin. We are experienced cruisers.
Here is the catch. He will NOT go to a doctor. In 25 years together he has seen a doctor once. He has no faith in our medical system. (Ironic thing his daughter is a pediatrician) I am not going to nag him as that only makes the situation worse, trust me, he is as stubborn as they come. We have talked about this and I have told him I will respect his wishes. This seems to have helped him to be able to open up to me more.
He can go for days or weeks and be fine and then one day he is moody, tired and definitely a big personality change.
I think my biggest struggle is with no official diagnosis.
I have all the legal paper work,POA, Health Care Proxy etc.
I have downloaded the recommended reading as well.
We are not stationary. We are full-time RVers who live and travel in our RV. That is why I need an online safe haven support place.
My dad passed 16 years ago from this disease.
I am glad I have found this online group and I look forward to many discussions with those here as well.
Comments
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Hi - welcome to 'here', but sorry for the reason.
That it is good that your paperwork is in order. very important.
Would he actually go to a doctor if you or his daughter told him it is required for insurance? There are many other things that can mimic dementia and could be treated, but he needs to go to a doc to find out.
Another concern is if he is driving. If he is getting lost like that in a grocery store or your cruise room, that isn't a good sign. It wasn't until after we took MIL off the road, for getting lost, that she finally admitted that she came to an intersection and forgot what to do.
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TY SusanB-dil for your reply.
As for driving, that was a question I had as well. Funny thing is, we just drove almost 800 miles from AZ to Utah and he did just fine.
IMO he would not go to a doctor if he was told it is required for insurance. He would give up his insurance.
And we can just forget about taking advice from his doctor daughter. They are VERY close, but very far apart on this issue and several other issues. One being politics and Covid vaccine.
Time will tell. I am very curious to see how this summer plays out. We are working a part time gig. The same place we worked last summer…so far 3 work days under our belt and all is GOOD.
I will keep everyone posted as I need the online support and friendship a safe place for me to discuss.
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Welcome but so sorry that you need to be here.
Other members will comment with advice and suggestions. I will just add my concern along with @SusanB-dil ’s regarding his driving. If your LO has some form of dementia, memory is not the only thing that can be affected. His spatial awareness can be impacted as well, so his driving will be fine right up until the moment that it isn’t when he is unable to react to a sudden event, be it a car changing lanes or a child running into the street after a toy. And someone might die because of this.
Taking away a person’s right to drive is often a battle. It sounds like your situation is even more dire because he would give up insurance rather than visit a doctor(and there are some treatable health issues that can mimic dementia symptoms, which makes his refusal to see a doctor even more tragic).
You mention you have a POA. Is it a Durable POA? If not, you will want to get that so that it remains valid when he becomes incapacitated. Also, if it is a DPOA, does it have any “springing” requirements such as a formal diagnosis of physical or mental incompetency?
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Welcome. Check his meds for cognitive side effects. Even over-the-counter meds can have cognitive side effects. You can search drugs.com or rxlist.com.
If he absolutely refuses a medical evaluation by professionals, you will have to be extra diligent in observing for changes which might appear before or slong with significant memory loss. There include difficulties handling money and difficulty doing multistep tasks and activities. Continue to monitor driving, also monitor the use of power tools. Are there firearms available? These must be put away. Read the Home Safety section on alz.org.
You may have to be on the lookout for a crisis opportunity. If he ever needs medical attention in the future, ask the doctors about testing for memory loss while he is under their care. Read a lot about the diagnostic process, get as much done as you can before he is released from care.
Has he signed HIPPA so that you can receive information from dictors about him?
Iris
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when you discuss his memory issues the next time, tell him that blood tests can determine if he has a low B12 level or a thyroid issue. Both can cause memory symptoms, but are easily treatable. Tell him that getting those tests done and getting treated mean that he can continue to drive and travel - that otherwise his condition will get worse and that he will soon have to give up driving and traveling. Do not use the word dementia. Because stubborn people just balk at that.
You really should step back and rethink what you want out of your future. If he has dementia, you are going to have to step up and be the adult and the decision maker. Possibly for your entire 70s. He won’t be able to make the decisions and have you just go along with his wishes. Your retirement won’t continue to be travel and this disease can make people poor.
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Thank you for your reply.
He takes NO meds - NONE!
We have no firearms. Trust me I monitor 24/7!
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Thank you. I am very well aware that our future will change dramatically if it is dementia.
I will definitely mention that there are "other" conditions that could cause memory issues.
I have rethought my future - despite not being legally married I am in this relationship for the long haul whatever that may be medically. This summer will provide additional information for sure.
I think part of his problem is caused from spending too much time on the internet. When he is active it is a whole different world vs when he is not active is when things seem to go amiss.
I am taking everyone's comments to heart.
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You have been given some great advice. If you are living in an rv and traveling I would be watching him very closely. Getting lost in an unfamiliar location would be a concern. Many people never see a doctor again after a diagnosis, but as others have mentioned there could be something treatable that needs to be ruled out. If his daughter is a doctor could she get a blood sample from him without an office visit. She might be able to at least rule out something. I tend to be a planner, so I would recommend really thinking through how and where he will be cared for. A plan B should be ready when the rv life doesn’t work anymore. Do you still have a home to move back to? Do you think you will try to care for him there? So much for you to think about. You have found a great place here to ask questions and vent frustrations.
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Plan B is in place. We are currently NOT in an unfamiliar place and he is quite happy here. We do not venture out much separately at all. He is NOT at that point as of yet.
No his daughter would not be able to get a blood sample from him. He is just like his siblings. One passed from cancer and would never go to a doctor, his sister found him in his bed….I don't know what it is about this family and doctors.
I will confess that it is my belief that every person needs to be their own advocate with medical personnel these days and realize they have the right to say no. While I visit for my annual Medicare physicals I myself do not need to visit a doctor regularly and I am a firm believer that the BIG pharma companies are running our medical system and doctors push drugs.
Thanks again for your response.
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There is a member on the spouse caregiver board @SDianeL who was an RVer w her DH at the time of his diagnosis. She is dealing w some health issues of her own and no longer a frequent poster but she may have some helpful hints about traversing and moving out of the RV life if that time comes for you and your partner.
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Thank you. Part of my stress comes from no official diagnosis. I have "assumed" the diagnosis after discussions with my mom and brother regarding my dad's early signs....and my partner telling me he is experiencing some memory issues.
IMO if it is we are in the very early stages.
We have a plan in place when the time comes to retire from the road.
One day at a time is how I am living and I am ok with that.
Thank you for reaching out.
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I did not come here to be attacked nor instructed what I should or should not be doing.
If I could delete this topic I would. Thanks to all but it seems that this group is not for me too many judgmental people.
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@hogladyrider welcome to the forum and I am sorry that you are experiencing this, I am sure it is extremely stressful. What you're describing definitely sounds like my mom in the early stages, but I kept questioning myself because 99% of the time she was still herself (and as strong willed and independent as they come!) I wish I had listened to my gut and pushed for testing earlier, but I know it can be so tricky to force these issues. My mom also loathes going to the doctor (and still does, it's WWIII every time we have to go to an appointment).
I feel like the most stressful time for me was during the months when we suspected but did not have a confirmed diagnosis, so I totally understand how this is causing you the most stress right now.
If your partner isn't willing to go to the doctor and you have already decided not to push, I think the most important thing you can do is prepare yourself for what's likely to come, and it sounds like you're already doing that. I would also encourage you to prepare for his/your safety, as others have mentioned above (think about things like the stove, power tools, etc.) - I personally didn't think about these practical every day safety issues, but I'm learning with my mom that this is hugely important. She seems to be completely fine and sound of mind, until suddenly she isn't, and that's when disaster happens.
I will also emphasize the comments above about driving - this one is a major safety issue. Shortly before my mom was diagnosed, a friend's dad caused a huge multi-car pile-up accident with multiple major injuries, causing a lot of thorny legal issues for the family to deal with. He was in his 80s and had a completely clean driving record but had recently been diagnosed with dementia. This scared me enough that when my mom was diagnosed, we took the car away immediately. She was not even the least bit cooperative, but I could never forgive myself if I prioritized her feelings over the safety of her/others (our dad died in a car accident 30 years ago, so it is especially personal for me). I know others on this forum have similar stories about accidents that could have been prevented and it is horrible to think about. Definitely keep this top of mind as you navigate your situation.
Good luck and I hope you will continue to use this forum as a source of information and support, it has been a huge help to me during some really stressful moments.
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No judgement. I just hate to see him miss out on any possibly correctible cause by not submitting to at least a few tests. That would be a shame.
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Please read a lot of threads. Your situation is not all that different from others. Also check out the Spouse/Partner board.
Iris
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Hogladyrider it sounds like you have had a wonderful life and partner - and this is surely not your first hard journey. But this can be a very long one, so please stay with us on this forum. And perhaps what seems judgmental is a combination of ‘wish I’d done or realized earlier’ and a lot of frustration and exhaustion. This journey really sucks. Please stick with us to laugh, cry, learn, vent and share your own wisdom with us.
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No judgments - only suggestions - because most of us have been there/done that and are working from experience. Your S.O. is blessed to have you in his life.
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@hogladyrider
Hi and welcome. I am sorry for your reason to be here, but happy you found this place.
This is a difficult situation. While you have some familiarity with dementia from your dad's experience with the disease, every person with dementia can present differently. It's possible your LO has a different kind of dementia, or that mom protected you from the gnarlier aspects of her experience. It is also likely that certain aspects of managing the risks associated with dementia are not what they were when mom was a caregiver.
I do agree that it's critical to reread the POAs. If it's not durable it will not be valid with the onset of his dementia. If it is springing and you can't get a diagnosis, then it's worthless. You or his DD may be faced with obtaining guardianship at some point, especially if he requires LTC because he can't be cared for at home due to you being unavailable because of an accident, injury or death.
I had a similar problem with getting a diagnosis for dad because mom was in denial. They both paid dearly for this.
Mom almost died with dad as her advocate when dad was in the middle (Feb 2016; he died April 1018) stages. My parents were in Florida at their winter place and mom developed an autoimmune liver failure. She was extremely fatigued and not thinking clearly. I called them from PA daily to check in. I even called police for a well check when 48 hours passed without being able to contact them. Dad reported that mom was napping or they were fighting because she was mean to him. The police said dad answered the door and dad said everything was fine that he didn't have his hearing aids in and didn't hear the phone. A few days later, I got a call from their local hospital informing me that mom was seriously ill. Seems dad got angry with mom for not cooking and dragged her to Publix to get something to fix for dinner. A neighbor, who happened to be a retired RN was alarmed that mom was the color of a school bus and drove her to the ER. Turns out, mom did go to the doctor several days before and the doctor told her to go to the ER, but dad decided they needed to go to happy hour for apps and drinks instead.
He could have a treatable condition that mimics dementia. My father had mixed dementia— one of which was eminently treatable. Had mom agreed to an evaluation instead of blowing me off for the better part of a decade, dad might have gotten effective treatment sooner and preserved more cognition until his Alzheimer's became more severe. Their quality of life could have been so much better for maybe 8 years or so.
One risk your mom might not have had to manage is access to the internet in the context of dementia. Dementia brings losses and changes that can be more profound than memory loss quite early on. If your LO gets lost in the cereal aisle, you can assume his executive function, reasoning skills, social filter, and judgement are already unreliable. The internet is a dangerous place for PWD who can easily make disastrous financial decisions (questionable financial moves and over-spending), they can fail prey to scammers of all kinds, feed delusions and paranoia and wander into porn sites that could trigger law enforcement involvement.
Dementia is an expensive proposition. You need to protect your assets as much as you can for future care costs and your own advanced age needs. Dad lost $360K day-trading early in the disease before he forgot how to log on. He also took out a loan and bought a car they didn't need without consulting mom paying full MSRP on a vehicle that's generally available a lower price. In your shoes, I would look to lock down any joint credit you have as well as your own with the 3 major reporting bureaus.
Others have mentioned the driving. I won't pile on except to say that my own mom (who doesn't have dementia) was sued after an accident she caused. There was a considerable time lag between the accident (6 months), the deposition (another 5 months) and trial date (a little over a year). They settled out of court, but had this been dad not only would his insurance have been invalidated by his diagnosis, his progression was swift enough that he would have died before the trial date. This is to say that the man who would be called to defend himself would be a more impaired version of who he was the day of the accident.
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I agree health care in this country is a problem. As much as you want a true diagnosis I think if it has always been his longstanding feelings to not see a doctor then maybe you need to accept his wishes. I imagine it would be very hard. Glad to hear a plan B is in place and that he is happy. The anger and arguments that would come with fighting him on this might not be worth it. Enjoy your time with him.
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Early on you wrote, “I will keep everyone posted as I need the online support and friendship, a safe place for me to discuss.” Please don’t misconstrue advice offered thus far as judgement, and abandon the forum. 99.9% of posters have already walked a mile in your shoes and are truly looking to help you with anything that you might (or might not) encounter. Yet, each of us expresses our thoughts differently and may be perceived as passing judgement.
I cared for my DH at home for 11 1/2 years, he resided in a MCF for 17 months; he will be gone one year this month. Everything of value that I learned while caring for him, I learned here. Please reconsider leaving the forum. You will receive online support and friendship in a safe place. Best wishes.(PS - - Arizona, Utah, the West were always on our bucket list. It wasn’t mean to be. Enjoy!)
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I am so very sorry you felt attacked and/or judged. It seems some people that are new to the forum are absolutely clueless on what’s happening to their LO and how to manage, hence some seemingly abrupt advice. IMO most everyone who provides answers/support here are compassionate and wise. I appreciate that some have difficult caregiving days too and may seem curt but their hearts are in the right place. Many are already in stage 8, having had their LO pass, yet still come to offer assistance because they’ve been in the down and dirty, made their mistakes and want to help whomever detour from the same.
You seem to have a clear understanding of where you and your partner are, except for the diagnosis. Lots of forum members don’t think an official diagnosis is needed, others do. You’ve thought things through and reflected on your life, you’re steps ahead, leaps ahead of some that come here and are blindsided by what is happening and going to happen to their LO. It is a steep learning curve for many, it was for me.
I’ve done my best at not taking things personally here and not judging others in return. We are all just doing the best we can caregiving within this disgusting disease. This forum was a lifeline for me throughout my journey caring for my mom at home til the end. I’m in stage 8 and still here…it continues to remind me I wasn’t and am still not alone. So many of the supportive posters are much more knowledgeable than I. Dementia does have some similar behaviors and symptoms shared between the afflicted yet no two dementia patients are the same nor are the caregivers or living situations.
You, of course, know your partner better than anyone and you’re strong and already have knowledge. I hope you will find yourself coming back here… you sharing your experiences also help others that may be struggling. I’m very sorry you are facing this heartbreaking journey.1 -
Thank you for your kind thoughtful words.
Here is the "deal". We are not even certain that it is dementia, I can only go by what I am told and what I read on the literature provided etc.
I respect his decision that he does not want to see a doctor. Knowing that he is safe that I will not nag him has helped in his opening up to me more.
As my mom said to me "he knows something is wrong, and he is afraid". Men process things very differently than women do.
I respect that he does not want to take any prescription meds, even if they may help.
I feel that each human has a right to make their own life choices, his are just different from mine.
I understand that those posting "mean well" with their warnings about driving etc. I felt attacked and I was very upset last evening. After I thought about it I have decided that I am just going to share how I feel and if folks don't like my decisions that is ok, it is my decision for my relationship.
Call it denial if you need to, but I am not 100% that it is dementia and not just normal aging. He is working a job and doing fine. When he is sitting around and not active and spends all darn day on You Tube and politics is when his mood changes. He take NO medication. I also notice that any alcohol does not help, I mean 2 beers seem to affect the mood. I have my thoughts that it may be something like sugar, bp,cholesterol etc. I mean this is a 69 year old male who has NEVER had his cholesterol checked nor his prostrate or anything else so you can see what I am dealing with.
I will look at some of the other discussions as well.
Again thank you for your support.
Susan
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@hogladyrider Will just pile on with what others have said - there's no judgment here, this is intended to be a safe space and a place for information and support. I am truly sorry you felt attacked.
I personally put a lot of thought and care into my response to you last night. I can't speak for everyone and have no idea if mine is the one you reacted to or if it was something else, but I can confirm that my response was definitely coming from a place of care and support, not judgment.
I will be honest that I was thrown off when I woke up and saw your response this morning - this is an extraordinarily difficult thing that we are all living through every single day, and we are all just doing our best to support and help each other here. I am relatively new to the forum and it hasn't been easy to share with others, so this made me second guess whether or not it was worth it to open up and share. Then again, I had no clue on any of these things when I started this journey with my mother, and I was grateful that others shared their experience and knowledge with me so that I could do what was needed, so I was just trying to do the same. The issues that we have all raised are very real for those living with dementia - it sounds like they don't apply to your situation, but we are all here to discuss Alzheimer's, so I think that is just naturally the perspective we are all coming from.
It sounds like you've got a handle on things which is amazing, and you're ahead of the game on all the fun legal and financial stuff, so you're in much better shape than where many of us started. I truly hope it turns out to be nothing and no matter what happens in the future, it sounds like your partner is in really great hands, and as others have said, this community is here if and when you ever need it.
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Thank you it was not you.
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@hogladyrider - welcome, but sorry you have to be here with us. Honestly, I think you've got this! We hit this stage with my partner just as the pandemic began. We found things to do together that maybe we wouldn't have done, or done the same wsy - hiking, biking, projects, artsy stuff, etc. It was a time of great memories for me, along with some scary stuff that preceeded it (getting lost, multiple times and ways...) Take this summer together and do the things you enjoy. Live each day as it comes. With or without a diagnosis you see the person in front of you, you seem to have great insight into what makes good days and bad days. You can try to find the good moments or you can get dragged down thinking about what's to come.
Maybe a tangent: if I ever get this disease, I think I'd go "no meds" too if I could do it without making my caregivers miserable. I would want to get it over with. I hope my family would respect my thoughts on the matter as you are for your partner.
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I’m glad you’re still here yet I hope you and your partner find you are NOT dealing with dementia. It’s such a life sucking illness for all involved.
Practical and caring solutions are what we look for here, some of the practical doesn’t seem very caring yet may still help in the long run. Definitely “take what you need and leave the rest”.Sending peaceful thoughts your way.
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hogladyrider, I've been exactly where you are. We were full time RVers since 2003. My husband Lonny (78) is a Vietnam Vet Marine. He started having symptoms a few years before I finally got him to a Neurologist. The situation that got my attention was when he asked my daughter what her brother was to her. (She is his step daughter) and he couldn't understand relationships. He started driving more slowly and hitting curbs & was always a good driver. He could no longer do maintenance on the RV. He would lose things. He couldn't read his analog watch. He could no longer spell common words. I got him an electronic spell check device & he couldn't understand how to use it. He was having trouble using the cell phone. I contacted his Primary Care Doctor and asked for a referral. Since your LO doesn't have a primary that obviously won't work. I found that bringing things up on different days worked with Lonny. He didn't want to go for testing but I explained that if he has a "brain" problem that we needed to know to plan for that. He took the 4 hour testing by a Neuro Psychologist & the results terrified me. She said that under NO circumstances should he be driving. His visuospatial reasoning was terrible. She said it was a matter of time before he hit a car or someone. (Hence his very slow driving and hitting curbs). I explained to Lonny that if he were in an accident, even if it wasn't his fault, we could be sued and lose everything. The next day he gave me his keys. We sold our RV & I moved us into a 1BR apartment. That was July 2022. Late last year I was diagnosed with aggressive breast cancer and had to place him in memory care facility. Hardest thing I ever did. As you know, this disease progresses differently with each person. His deterioration could be quick or slow. Please stay in this group. It helped me more than anything. Please keep us posted. Read the book "The 36 Hour Day" - it was recommended to me by a nurse. It also helped me.
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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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