I’m new to this forum, although I’ve been on some other Healthunlocked forums, this is my first time on this one.
My wife was having some problems with short term memory. This became very apparent, and worrying, when I was parked outside a place having dropped her off for a short appointment. When she came out I could see her but she looked around and then went off in the opposite direction. When I caught up with her she said I must have moved the car (I hadn’t).
After a lot of persuasion she agreed to have an assessment at the Memory Clinic. After a brain scan 2 people came to see us and gave us the terrible news that she has some brain atrophy and was officially diagnosed with Alzheimer’s Dementia.
After a short spell on Donepezil she’s now on Memantine which will, hopefully, slow down the progress of the disease.
She has really struggled since the diagnosis in September last year and doesn’t want anyone to know, not even our close friends. They obviously realise she’s getting forgetful and keep asking me if everything’s ok. It’s really difficult not to be honest with people.
I’m trying my best to cope with this but it’s so difficult. My Mom had Vascular Dementia so I had some experience dealing with her but this is a lot different somehow.
Any advice on how to deal with this would be very much appreciated.
Kind regards
David
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Davewm
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I’ve used Health Unlocked for years now on various forums and I’ve always had brilliant results and responses which I’ve always found very helpful.
Unfortunately it doesn’t look as if the same responses will be forthcoming from this forum. It’s such a shame as I’ve always found the other forums worth using , both asking questions and answering for other people when I could.
Hi Dave, I have mild Alzheimer’s so know what your wife is experiencing. I find being stressed to find a word makes it harder to find it and loose my train of thought if interrupted mid sentence. I tell people I know that I have Alz and those I don’t I usually tell straight away if I am likely to meet them again.
Shopping for example can be difficult even something as easy as scanning your own shopping. Did I scan it did I pay for it? Then I come out of the shop and feel lost in the middle our local high street.
My advice is for you to encourage your wife to accept that she has problems but in a relaxed way. Don’t use phrases like,” I told you that” or, “do you remember”. Feeling pressured to remember makes it worse.
All the best, it is possible to laugh about it together and accept it even when faced with the most obvious lapses in memory.
Hi David, You’re welcome, also to ask me questions if you want. I only speak from my personal experience. I was an aircraft engineer before I retired so I find it frustrating with Alzheimer’s when simple task slowly become more challenging.
I loose things all the time even when they are right under my nose. I called it specific blindness. Like my phone is on the table right in front of me but I fail to see it and search everywhere only to find it was obvious right in front of me when I started searching.
Keys are a nightmare, I’m always looking for them and have to be very deliberate about putting them in their correct place.
I can clean my teeth and a few minutes later find myself in the bathroom cleaning my teeth again as I forgot I had just done them.
We have a boat and I fret at home not being able to remember if I have shut off the sea cocks. I have in fact solved that by taking photos on my phone before I leave the boat
It’s very frustrating both for me and for my wife who is very good about it. To talk to me you wouldn’t know. I can chat about the my older experiences for hours it’s just the last couple of minutes ago that are tricky.
My wife can trigger me to remember so it’s not that I have forgotten something it’s that my brain has lost the link to it. She might say, “Do you remember the film we watched last night”. I will have no idea. Then she will give me like bullet points and I will remember the plot clearly.
I took part in an Alzheimer’s drug trial and had 16 appointments with 3 MRI’s and both psychiatrists and doctors testing my reactions to the trial drug and monitoring me very closely.
My NHS doctor said I had passed the NHS Alzheimer’s test and said I didn’t have anything wrong when I tried to update my medical records with her as they were not involved with the trial. The same thing also happened to another person who was with me on the trial.
The NHS test was not a memory test but more a cognitive one. The doctor asked me the date and time Well, I had an appointment and arrived on time and on the correct date. Also remember a name she gave me , John Smith, well it’s a beer for one thing. Names of the months from December backwards. I told her my long term memory was okay. She sketched two 5 sided house like shapes on a sheet of paper and asked me to copy it. If she had shown it then took it away for me to draw from memory then it might have been of some use. Definitely not when I could see it.
Sorry too much info I’m sure.. I will bother you again unless you ask me something specific.
Navigating a diagnosis of Alzheimer's Dementia is profoundly challenging. Here’s a structured approach to address the concerns you’ve shared, emphasizing empathy, practical strategies, and support:
1. Respecting Your Wife’s Wishes While Seeking Support
Gentle Conversations: Approach discussions about disclosure with empathy. Acknowledge her fears (stigma, loss of autonomy) and highlight the benefits of sharing with trusted friends (support, understanding). Suggest starting with one or two people.
Alternative Communication: When friends ask, use vague but honest responses: “She’s managing some health challenges, and we’re focused on her care. We appreciate your kindness.” This respects her privacy while acknowledging concerns.
2. Prioritizing Your Well-Being as a Caregiver
Support Networks: Join Alzheimer’s-specific caregiver groups (e.g., Alzheimer’s Association, local chapters) to connect with others facing similar challenges. Consider therapy to process grief and stress.
Respite Care: Arrange temporary care to recharge. Even short breaks can prevent burnout.
3. Education and Preparedness
Understand Alzheimer’s Progression: Unlike Vascular Dementia, Alzheimer’s typically involves gradual memory decline. Resources like the book The 36-Hour Day or websites (alz.org) offer insights.
Safety Measures: Implement GPS devices for wandering, simplify home layouts, and use memory aids (calendars, labeled cabinets).
4. Medical and Practical Planning
Treatment Expectations: Memantine may slow symptoms but won’t halt progression. Stay in touch with her care team about adjustments.
Legal/Future Planning: Secure legal documents (power of attorney, advance directives) while she can participate. Discuss long-term care preferences early.
5. Maintaining Quality of Life
Meaningful Activities: Engage in hobbies she enjoys (art, music, walks) to foster connection. Focus on remaining strengths rather than losses.
Routine and Structure: Consistent daily routines reduce confusion. Use technology (reminder apps, automated pill dispensers) to support independence.
6. Emotional and Social Strategies
Couples Counseling: A therapist can facilitate conversations about fears and adjustments, helping you both navigate emotional challenges.
Community Resources: Explore adult day programs or in-home aides for future needs. These can provide social engagement for her and respite for you.
7. Addressing Friends and Family
Controlled Disclosure: If she consents, share with a few friends who can offer practical help (meals, companionship) without overwhelming her.
Educate Others: If disclosure occurs, guide friends on how to interact supportively (e.g., patience, avoiding corrections).
This journey is one of adaptation and resilience. While the road ahead is uncertain, prioritizing open communication, self-care, and proactive planning can empower both of you. Remember, seeking help is not a sign of weakness but a step toward sustaining your capacity to care. You are not alone—lean on professionals, support groups, and trusted friends as you navigate this together.
Thank you so much for your help and advice. I know we’re on a difficult journey (my Mom had Vascular Dementia over 20 years ago) but it seems quite a lot different when it’s your wife who is going through this.
I’ll certainly take heed of all the advice and thank you once again for reaching out to me.
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Mother in law
I could use some advice please.
I'm new and looking for advice