New to the community - First post

Britto57

Hi all - This is my first time on the site and my first time posting. My DW was diagnosed with MCI but no definitive diagnosis of Alzheimers yet. She is most likely still in the early stage but when she is stressed or in an unfamiliar environment her symptoms get much worse.

She was diagnosed with MCI by a neurologist at OSU, prescribed galantamine and later switched to Rivastigamine patches. They monitor and re-evaluate her every six months and tested her spinal fluid last year. That test revealed one of the two factors was in the normal range and the other was unusually high. Bottom line - not Alzheimers -- yet.

Her cognitive test scores have stayed at or near the same level but her memory lapses, especially short term, and periods of confusion have increased noticeably over the last 12 to 18 months. She has also withdrawn significantly from family and social activities and relies almost entirely on me for social interaction, entertainment, and emotional support. Her sister is twelve years older and moved full time into a memory care unit last year with late stage. My DW's symptoms and rate of progression are very similar. She recognizes this and is understandably scared at the prospects.

I still work full time. My DW retired from teaching six years ago and is home alone much of the day. She is eager for me to retire so we can be together all the time. I enjoy my job and find it provides much needed socialization with other people and a sense of accomplishment and being valued. I worry that retirement will be bad for me physically and psychologically.

DW rarely leaves our house except to drive to the local grocery store. She is still a good driver but is so afraid of getting lost that she won't drive other places on her own unless I have programmed the destination in the car's GPS.

I feel stressed most of the time when I'm home due to the sense of walking on egg shells around her. I have learned to ignore or work around most of the memory lapses but sometimes slip and correct her. This invariably makes her angry at me, scared, worried about getting Alzheimers, or all three.

I'm growing tired of answering the same questions over and over, or hearing the same story, or listening to the same "interesting" article from a web site, or book, or magazine repeated as though she's discovered and is reading it for the first time.

Its confusing and disconcerting when she seems to be operating at a normal level for hours on end and suddenly starts asking what we did an hour ago, what day of the week it is, where and when we met and got married, or what her children's birthdates are.

It's disheartening to know that this is just the beginning and things will probably get worse and not better. Her adult children live far away with their own very busy lives and her friends have pulled away so it feels like I'm mostly dealing with this on my own. My only break is my work. I'm lucky because she remains very loving and affectionate towards me. But that luck sometimes feels more like a curse because there is no one and nothing else in her mind.

So hoping to hear from others who have maybe experienced these things and want to listen, share, and maybe offer some advice. Thank you.

FTDCaregiver1

Hi Britto, your story rings familiar in my early days with my DW back in 2017, finally diagnosed in 2019 with EO FTD. She could no longer work in 2017 and remained home. Like you, I continued working and derived much joy from work and social connections it offered me. But, as things progressed, forced to retire in 2020 to care for DW. Much has happened these past four years but we I currently care for her now, with a lot of help, at home and some form of acceptance and peace are with us as she continues to decline. I commend you on learning to no longer to correct your wife, I too was frustrated but learned over time, that my behavior was a trigger for her, so had to, and still do, check my behavior when being with her, adjusting my expectations, still able to connect with her but on her terms, in her world. I pray your DW condition doesn't progress, and peace finds you both. Feel free to message me if you need a good listener. Be aware of what your body/health is telling you during this stressful time as I suffered health issues due to overwhelming stress back in 2020 when things were so bad. There is hope, help and a way forward brother. Take care.

CindyBum

Welcome, and sorry you have to be here.

I could have written these words a year and a half ago. Had an MCI diagnosis in 2020 and 2022, and a dementia diagnosis this week. This past year has seen a pretty dramatic decline in my DWs cognitive function, so the diagnosis wasn't a surprise, but still a punch in the gut.

I, too, am still working and I enjoy it a great deal. It's a reminder of the world my DW and I both used to live in together and one I hope to maintain some contact with even as she continues on her downward path. I'd say she's in Stage 4, dipping into Stage 5. She remains loving and sweet and we even have moments of connection here and there.

In the broad scheme of things, we're both lucky. We live in our dream home, in our dream town and have a deep, meaningful connection. But drilling it down to the day to day and we're both devastated to know we'll be losing each other in this material world sooner than we wanted.

M1

welcome to the forum Britto. You have come to a good place.

This is a very familiar story, and most of us spousal caregivers find ourselves in a similar position of isolation as our partners deteriorate and become more and more dependent on us to provide the "scaffolding" that allows them to continue to function. It's a very lonely and heartbreaking experience.

It sounds like things are getting to a point where she likely is not safe to be alone while you are working. It is also pretty clear that she should not be driving. There are many, many threads and discussions on this. You probably need to discuss this with her doctors and disable or remove her access to a car.

Do you have power of attorney for her? That is a thing that needs to be addressed early. You imply that her adult children are not yours biologically; in blended families, clarifying who has decision-making authority is even more important. If you have not already done so, you should consult a certified elder law attorney (look at nelf.org).

Have you investigated whether there are day programs near you that she could go to while you work? Otherwise, your options probably are to bring in a home caregiver, which can be costly--but not as costly as an accident, fire, or plumbing catastrophe while you are not home. You should also go ahead and investigate memory care facilities near you. You need to have a plan B should you have a health emergency, or should her condition accelerate.

Lgb35

We are at the MCI stage as well. We are going for another neurophysiological test mid April and I will not be surprised to see a decline of more than slight since last year. DH spinal tap showed borderline EOAD as 1 value was too high for definitive diagnosis. DH frequently says the wrong word however most of the time I know what he means so I go with it and he is unaware of how often this happens. He can no longer manage his medications. If I put them in a day of the week tray he can take them on his own but if I don’t refill it he asks me for his meds. He also still uses the washer and dryer but if the settings on the dryer get changed he can’t figure out how to fix it. I am still working and plan to work for a long time yet as I am only 54. I do work from home so I will be home and when that is not enough I am hoping to find someone to come into the house to help out while I work. We are not wealthy so I do not see MC as an option. I am too young to use up what retirement income we have set aside.

clarinetist

Hi Britto,

This is a great place to get help-welcome. I second M1’s recommendation to check out adult daycares. I saw many spouses and adult children utilize daycare so they could work. The daycare we used also had transportation to and from the daycare.

I also agree with M1’s caution about driving. My DH drove while being diagnosed with MCI, and he was having issues with way finding. As soon as he got a formal Alzheimer’s diagnosis, I asked him to stop and luckily he agreed. In retrospect I should have stopped him sooner. If there had been an accident, with his dementia diagnosis we could have been sued even if the accident wasn’t his fault. I knew we’d need money for his care and couldn’t afford to take the risk.

Good luck to you-it’s a hard road, but there are many supportive people here to provide guideposts.

Britto57

https://alzconnected.org/discussion/comment/202811#Comment_202811

Hi FTDCaregiver1 -- Thanks so much for your caring and thoughtful response. I will pray for you and your DW as well. I'm sure there will be more questions arising as time goes on and appreciate having someone to talk to about them.

Britto57

https://alzconnected.org/discussion/comment/202816#Comment_202816

Hi M1 - Thanks for your thoughtful and caring response. You bring up a lot of great questions. Her family and I have discussed the driving question and the concerns you highlight. Her neurologist recommended that we not try to take her driving priviledges away at this point so I'm monitoring closely. She's not much of a risk taker and is very reluctant to drive anywhere other than the grocery store less than a mile away. I now take time off from work to drive her to medical appointments or other non-grocery store destinations and she likes it that way.

I do have a POA and we are in the midst of updating all the estate planning documentation in conjunction with her daughters and her brother, a practicing lawyer. Fortunately I have a great relationship with the daughters and her brother and we are all on the same sheet of music as far as decision making authority. I have indirect family experience with situations where those things aren't ironed out in advance so am very careful.

Her daughters and I have started investigating caregiving options for in home care, and possibly eventual transition to assisted living/memory care facilities. I wonder/question how well she will accept day care and/or in home care options when the time comes. Her older sister was very hostile and I can easily imagine her reacting the same way.

Early on she was eager to seek a diagnosis and be proactive in treating/dealing with it. She used to be fairly certain and very scared she was getting Alzheimers. Now, as things progress she seems to be more and more in denial - questioning why she needs to see the neurologist, etc. When she catches herself forgetting facts about our marriage, close family, etc. she is much more inclined to make excuses and attribute it to age (she's 64), or having too much information to keep track of, etc. Its hard to know when to just let her go on and when it may be important to point out that she/we may need more help.

Iris L.

IMO, this is not MCI. I have CI and I am not like this.

Iris

Britto57

https://alzconnected.org/discussion/comment/202965#Comment_202965

Hi clarinetist - Thank you for your comments and support. I wonder when is the right time to seriously consider enrolling her in adult daycare or even in home care. For now she seems to still be able to function well at home. She can handle household chores and appliances pretty well still. However, she really struggles with loneliness and boredom but can't seem to break out of her own self-imposed isolation. She has friends and family in the area but won't reach out to them. When they reach out to her she often finds excuses not to get together.

I would feel better if she spent more time with other people but she resists doing anything socially on her own and would see adult daycare as something she doesn't need and an unwanted reminder of her progression.

She's probably right at this point. She is with it and capable enough that she doesn't yet need care during the day. She does need some kind of social engagement on a more regular basis. She would prefer that engagement come through and/or from me. I feel, and my close family, her daughters, and my therapist all agree that giving up my work and giving in to her desire/need for my constant attention will be very detrimental to my health and well being.

I try to balance it by devoting all of my time and attention to her in the evenings and on weekends and be working from home at least one day a week.

In the meantime I try not to feel too guilty and I monitor her for signs that its time to bring in external help. How is she handling her meds? Is she struggling with household tasks? Can she manage the TV and remotes? Is she leaving the house and trying to drive places? Has she signed up for a new scam or talked to a scam artist on the phone?

M1

Britto, if you're worrying about scams, medications, etc. it reinforces to me that it is in fact probably time to bring in the help. I understand the resistance: my partner is still resistant to most help (and she has now been in memory care for two years). The problem is that you have to do it anyway. All of us who remember our loved ones as they used to be tend to overestimate their abilities. You don't want to wait until there's a disaster.

A lot of our loved ones isolate themselves from friends and family as their disease progresses--my partner did this too. I think it becomes too difficult for them to engage--but they can't admit this or even perceive it, really. Read about anosognosia: most with dementia have it, and they truly are not able to realize that they have deficits. This probably applies to your wife now, too.

I don't think I would have ever been able to convince my partner to go to a day program; she is too much of an introvert and a loner, and this has continued to be a problem in memory care (she's not one for most group activities that are common in memory care and day programs). I tried my hardest to find home help, but I was looking during the pandemic and could not find anyone in our rural area, much less anyone vaccinated (which was important as my partner has a lymphoma). Some have been very successful with home help, though, and sometimes using an excuse like "this person is a friend and needs a job" has worked. However, you should never suggest that the help is for her: say it's for household chores, cleaning out closets, things like that until rapport is established.

upstateAnn

I have found two things that helps very much with social engagement. My husband has two hour long sessions a week with a trainer. He also sees a therapist weekly. I insisted. We also have routine lunch dates with friends. Meanwhile a word of advice. You are the boss here. Often my DH complains about working out or lunches. I give him no choice. He is always so happy fterwrds.

Also , you must learn and practice patience. Your wife IS coping with a terrible brain disease.

Denise1847

Everyone has given you wonderful advice. Believe me, these people know more than the doctors. My only advice is to work as long as you can. I feel like I am literally going crazy dealing with the monotony of this every-day grind. Also, read "the 36 hour day", check out Tam Cummings on You Tube.

Britto57

Thanks to all for the great advice. UpstateAnn I will definitely work on getting the personal trainer and the lunch, or maybe dinner dates with friends. Good reminder also on patience and what DW is dealing with.

We also have a very large house with just the two of us and have been talking about downsizing for a while. Now I'm concerned that such a big change in environment might really throw her for a loop.

Does anyone have any thoughts on that?

trottingalong

https://alzconnected.org/discussion/comment/203597#Comment_203597

I’m happy we are already in a smaller home. My DH is in about the same space in his progression. He can barely handle family coming to visit or call him. We still can have conversations, but I could never move at this point in time. It would throw him for a loop. I think it’s an individual case by case thing.

M1

Britto, my partner was resistant to downsizing and I regret very much that I didn’t push harder for it. Do what would work best for you, not her- harsh as that sounds, you are the one who has to bear the consequences. But you may want legal advice about selling, if you need to consider qualifying her for Medicaid.

mrahope

FWIW, we did downsize and move closer to DS and his family to access support and make our lives a bit simpler. A house with no stairs has been a huge plus, as is a smaller community where most everything is close by. I got all kinds of grief from DH about it, and although most of it was triggered by my need to have some backup in caring for him, he still believes we did this to be closer to our (so far) only grandchild. That works for him. If you are moving to a new area, please check into medical services and how to access them. We've waited long periods for appointments with any needed specialists.

Also, my DH has resisted daycare and two in-home caregivers I tried. He is now beginning to even resist having my DS or DDIL come and stay with him so we are looking at MC in the near future. I feel I have no choice.

Britto57

Hi All - Its been a while since my last posting. Someone recently sent me the attached article about understanding dementia. Reading it has provided some relief and comfort in explanations of DW's symptoms along with coping mechanisms. I'm guessing many of you have already seen it but it was new to me and I wish there were more examples like this out there.

understanding-the-dementia-experience.pdf