When to escalate care and experience with options

KP1953

As may be seen in my profile, I myself am a physician, but work in a field (neonatology, newborn critical care) that is as far from geriatrics/Alzheimer's as can be, so I am as lost as anyone and perhaps feel a bit of added guilt about my lack of direction.   We live just south of Boston. 

My wife is 69, diagnosed about 3 years ago, but in retrospect may have been showing subtle signs for some years before that.  She has an "unusual but well described variant" which has a strong element of visual-spatial disorganization which sort of obscured her cognitive challenges.  For quite some time I was focused on getting ophthalmology/optometry consults, testing, new glasses, etc.  When I thought she may have had visual field loss, that is what finally got us to a CT/MRI which showed her parietal lobe lesion and got us to diagnosis but by then she was already moderate stage. Of course, along the way she resisted any attempts at neurology referrals, etc. but I should have pushed harder I suppose.

I am lucky to have a daughter and a sister-in-law who can help provide assistance daytime and even some nights while I am at work, but over the past few months things are getting noticeably worse both visually and cognitively. Formerly a very meticulous and rather stylish person, now hard to get her to even shower, change her clothes and she is constantly soiling her underwear as she doesn't wipe herself well. She doesn't resist my helping her shower change, but argues with my daughter and sister-in-law, frequently simply refusing and she gets very angry if you even suggest she be more careful with her toilet care. She has difficulty even feeding herself, has to wear a bib and resists any attempts to help her with eating, so we now tend to eat a lot of sandwiches, other things that don't require fork/spoon.

We've already had an episode of her going off on her own before I was awake at our Cape house this summer and luckily the ID bracelet (which I have to "force" her to wear) allowed the police to contact me when some kind person noticed she seemed lost a mile or so from our place; at home she stays just around our block (quiet, friendly streets where folks know her and keep an eye out for her).  Most recently, she sems to be having some "sundowning" behavior, she is getting up 2-3 times after in bed for no specific reason and just wanders downstairs, needs to be shown back to bed, etc.

Anyway, I'm thinking that it may be time to move on to more professional in-house caregiver assistance and was wondering if anyone has suggestions as to how best to pursue, any recommendations or pitfalls to avoid, personal experience in this area, etc.  Must say I am disappointed in how little assistance/suggestions her internist and neurologist have to offer, essentially referring me to this organization....

So any thoughts, suggestions, anything to help me get started greatly appreciated. 

jfkoc

Finding good "matches" are, I think, a hit or miss situation. The more feelers you get out there the more choices you will have.

There are wonderful caregivers out there. They usually stay with the same person until no longer needed which means check the obits. Also, get the word out that you are looking. Often a freiend knowd a friend who has help for their father and that helpers know of someone etc.

I used an agency three times until we found a wonderful caregiver. One was a local agency with great recs. They were hossible. The other was Home Instead. They were great. It is a national organization so each office will vary. 

gampiano

Hello,

A good place to start would be to contact your local Council On Aging, or senior center in your community. They have abundant information and can even give referrals re: caregivers or put you in touch with a social worker.

There is also a website , Care.com, which lists potential caregivers in your area. They do not vet, just post the profiles, and connect you with people for a small fee. We use this service on the Vineyard, and several of my relatives have been hired by visitors who need childcare or eldercare.(We live on MV year round).

Some people here have gone through an agency, Sostek. They place in home caregivers, some are live in. Company is Mass. based.

I'm not at this point yet, but finding care on the island is challenging, especially respite care. I'll keep posting as I obtain more info. Sending caring thoughts your way.

Iris L.

KP1953 wrote:

My wife is 69, diagnosed about 3 years ago, but in retrospect may have been showing subtle signs for some years before that.  She has an "unusual but well described variant" which has a strong element of visual-spatial disorganization which sort of obscured her cognitive challenges.  For quite some time I was focused on getting ophthalmology/optometry consults, testing, new glasses, etc.  

Welcome KP.  I was a pediatrician in my career, and also knew next to nothing about dementia.  I learned quite a lot from the members, also alz.org and other sites.  There is online reading material, such as Understsnding the Dementia experience.  I am unable to make a link, but one of the other members will be able to.  Also read about the stages.  Your DW sounds about stage 6.

Read about the seven A's of Alzheimer's.   Visual spatial disorganization is a feature of dementia, called agnosia.  Also be sure to learn about anosognosia,  which is lack of awareness of having dementia. 

Read a lot and post a lot.  The members will help you. 

Iris L

M1

Hi KP, just adding a welcome, I am also a doc (partly Boston trained) who had to put my partner of 30 years into memory care last spring.  No private in-home help to be had in our rural area outside of Nashville, I hope you have more luck.  You may in your area, and as jfkoc said, it's probably hit or miss.  Word of mouth might work, if you have hospital colleagues you could approach (nurses and ancillary as well as other docs).  

In terms of getting her to accept the care, that may be another matter.  Kind white lies--whatever brings comfort--are advocated here.  Tell her it's help for you, a friend, or someone who needs a job, those things have both been known to work.  

I concur with your disappointment at the lack of practical advice from the medical professionals.  Am also always humbled by how little any medical expertise matters when dealing with your own loved ones.  This site has been an emotional and practical lifesaver for me, hope you may find it so as well.  Good luck.    

gampiano

Hi Again,

Re: I D Bracelet. My husband found a way to successfully remove 3 bracelets. I finally found a non removable one from Medic Alert, with a "lobster claw" locking clasp. No more problems with that issue! 

Sligo177

KP,

You are not lost in your direction at all!!  You have been so caring with her.  Doesn't matter what your training is, your LO is so important to you emotionally (I am an RN)  that with all our years of problem solving skills, we still second guess ourselves.  And you know it's time to have help.

 I asked for recommendations from my family first, and I did get caregivers on two occasions who worked out well for a while.  One was a friend of my daughter's who did home care, and the next was also a family friend who had done home care.  He needed more and more care however, and it seemed I couldn't cover all the hours needed to keep him safe and me sane.  As his condition deteriorated, he was hospitalized, and eventually I moved him to memory care.  You may find great help from an agency, I didn't want to commit to their required hours per week at the time, that's the only reason I didn't go with them.  However you find someone, an agency or private care, good luck to you. 

Pat6177

KP1953, Others have made some good recommendations re in home care. I thought I would just throw out some misc suggestions based on your post. If you can find a long term care manager, that might simplify things. The care manager can handle a variety of issues like find good in home care people, managing them, teaching you about dementia and the things to expect and suggestions for how to cope with various behaviors. I think the precise services offered depend on the individual care manager. The tougher question is how to find one. If you know of a social worker that works with the dementia population, they may be able to recommend one. Or your local Council on Aging. This is an added expense but if you can afford it, it may be useful.

As for toilet care, you might see if she will wear a pad and that can easily be changed. 

You say she has difficulty feeding herself. Another poster on here (Beachfan) found a plate guard that attached to one side of the plate and made it easier for her DH to get food onto the fork. I’m not sure if that would help your DW.

The wandering off is a more serious concern. She may not dress for the weather when she leaves the house and if not found quickly might end up with frostbite. She may wander into traffic. So many things could happen. Right now, she might stay in your neighborhood but what will happen when she goes beyond and can’t be found. There are a few things that you can do while sorting out the issue of in home care. Some people put in a slider lock above the person’s line of sight on the door to the outside that she would usually use. On other doors, you may want to install a lock that requires a key to unlock. The key can be kept close by or taped to the door above her line of sight. One friend told me that some facilities put yellow caution tape across the door and PWD don’t cross that. You can purchase a pad to put beside the bed that will sound an alarm when your DW gets out of bed and steps on it. This will alert you to her getting up. It is VERY important to prevent her from wandering outside.

Almost everything I know about dementia, I learned on these forums. Keep posting and keep reading.

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Joe C.

KP, Welcome but sorry you needed to seek out our community. I also live on the South Shore so have some local contacts. Prior to placement I had success with hiring a caregiver through an agency. As mentioned by M1, it may work best not to tell her that the caregiver is there for her. My wife would not accept a caregiver when first suggested but at one point I needed surgery and told her the caregiver was there to help me recover which she was fine with. She bonded with the caregiver and we ended up having her for 4+ years until placement. Another suggestion would be to join a local Caregiver Support Group. There are numerous both in person and Zoom groups in our area and they are a good source of information about what’s available locally. If you like you can connect with me using the Connection tab above and I be happy to give you names & contact I formation for the Agency/groups I have experience with.

KP1953

Thank you all for your responses and suggestions. It has given me heart to even get simple suggestions as to where to start.  I am making contacts and just being proactive has made me feel more confident.  The experiences and sport of others has been truly restorative and it has already proven practically helpful on some of the specific issues.  Have also reached out to one of her dear friends whose mother suffered and died from Alzheimer's, and she has some local insight and suggestions.

I think the main takeaway was to not be daunted and just put out as many feelers as you can. 

Thanks again for your suggestions and support. I'm sure I will look to this site often, it is truly a wonderful resource.