Transition to no longer living on own

rhoadsa

Hi all, I am new to this. My MIL was recently diagnosed with ALZ (two weeks ago) and had been diagnosed a year prior with MCI. Prior to the ALZ diagnosis she had been living on her own working and driving part time. She is 84 and has been an independent and a strong woman as long as I have known her. The week after the diagnosis, she was hospitalized. She has declined quickly within the last two weeks since the hospitalization and beyond. Memory now seems to include short term inability to remember recent conversations (as in 2 hours ago), not remember family in pictures and we already had some paranoia starting. Very weak, shaky and sleeping a lot. No more working or driving and the doctor told her until she gets her strength back (which was helpful to come from him)which I fear will not improve as she consistently says ‘I am not hungry’ which we take in stride and continue to give her 3 meals a day and 2 snacks. 3 things we are struggling with so any advice is welcome as this is all new to us:

1. We are at a loss at the swiftness of the decline over the last two weeks. Is the normal?

2. We have sought to find someone to speak with in person to ask and answer questions. Both the PCP and the neurologist point us towards the other. So this is how I came to be on this site. I was surprised at the lack of support in guidance, staging and expectations from the medical side for us. Even suggestions on where to go to find it. Is this normal?

3. She will no longer be able to live by herself and we do not know the impact if we mover her either out of state with her daughter or here in the same town with us. Will that transition cause another steep decline? Is is better for us to take care of her in her home?

Any offering of advice is greatly appreciated. We are heartbroken and feel like a canoe without an oar.

towhee

Hi rhoadsa, welcome to the forum.

 We are at a loss at the swiftness of the decline over the last two weeks. Is the normal?

Decline during and after a trip to the hospital is quite normal. You can have aftereffects of anesthesia, effect of narcotic pain medication, effect of infection, simply being out of her own environment, etc. Being ill worsens dementia and hospital visits are just not good for elderly people in general. For medical care of the elderly I recommend reading the book by Mark Lachs MD - What Your Doctor Won't Tell You About Getting Older (also called Treat Me Not My Age). Regarding appetite, people who feel ill often do not want to eat, the sense of taste changes in people with dementia, or medications could be involved. See if there is something she seems to like, and give her more of that, sweet, salty, etc. Contact her PCP with specific concerns like not wanting to eat, he may recommend Ensure or Boost temporarily so she does not lose weight. Also with concerns about being weak and sleeping, he may want you to check blood pressure and oxygen. If she has trouble walking she should have been sent home from the hospital with visits from a home health nurse for a week or so. That nurse is a good source of information. You may want to check into that.

I was surprised at the lack of support in guidance, staging and expectations from the medical side for us. Even suggestions on where to go to find it. Is this normal?

Yes. Doctors do treatment and cures. There is no cure for dementia and very little treatment. What there is is care. Doctors do not do care. That is left to nurses, social workers, therapists, etc. and last but definitely not least, family. Even some doctor practices that call themselves Memory Centers might offer very little of the information you need, although some have a social worker and therapist on staff. Usually, once you have a diagnosis the neurologist says "Here is some Aricept, some memantine, see you in six months, see your PCP as necessary". You will have to build your own care team, usually without input from the doctors. The Alzheimer's assoc and this forum is a good place to start.

3. She will no longer be able to live by herself and we do not know the impact if we mover her either out of state with her daughter or here in the same town with us. Will that transition cause another steep decline? Is is better for us to take care of her in her home?

Often when you go into an unfamiliar environment there will be a temporary decline, but the steepness of this one is probably caused by illness. Quite honestly, where she lives depends on her finances and the availability of family care. It is not at all unusual for LOs to be moved more than once as their care needs change. Some people do better at home, some do better in a facility, at different stages of the disease.

You are being a good advocate for your MIL. Also be an advocate for yourself and your husband. This is a long journey, and to complete it without damage to your relationships you need to consider yourselves as well.

JeriLynn66

This site offers a 24 hour hotline with trained professionals to assist you in putting together a plan and recommendations.

harshedbuzz

@rhoadsa Hi all, I am new to this.

Hi and welcome. I am sorry for your reason to be here, but glad you found this place.

My MIL was recently diagnosed with ALZ (two weeks ago) and had been diagnosed a year prior with MCI. Prior to the ALZ diagnosis she had been living on her own working and driving part time.

Have you ever that the occasion to spend a couple of 24/7 days in your mom's home with her. It's very possible she wasn't doing as well as you thought at the time she got the MCI diagnosis. There's a chance she was showtiming when you saw her. This is when a PWD can hold it together for a short period of time and present as less impaired then they typically are.

My friend's mom showtimed so well that despite them spending each afternoon and evening togther my friend only thought mom was MCI. When she decided to move mom in, she got a real awakening in how poorly her mom was functioning. When my friend got mom's place ready to sell she was appalled by out of date foods and odd hoarding. My parents lived at a distance when dad was diagnosed which meant I stayed at their home for about 72 hours straight which gave me truer insight into how dad was doing. Dad was pretty offensive at that point and did all in his power to run me off as he still had a sense he was struggling with his memory.

She is 84 and has been an independent and a strong woman as long as I have known her.

One of the saddest aspects of this is that she is no longer that person. She may look and sound the same, but you will need to step in to keep her safe.

The week after the diagnosis, she was hospitalized. She has declined quickly within the last two weeks since the hospitalization and beyond. Memory now seems to include short term inability to remember recent conversations (as in 2 hours ago), not remember family in pictures and we already had some paranoia starting. Very weak, shaky and sleeping a lot. No more working or driving and the doctor told her until she gets her strength back (which was helpful to come from him)which I fear will not improve as she consistently says ‘I am not hungry’ which we take in stride and continue to give her 3 meals a day and 2 snacks.

Why was she hospitalized? Hospitalization is hard on the elderly in general and more so on those with dementia. There's a whole host of medically related events that can put dementia into overdrive. Infections can change behavior. Something as simple as a UTI can progress a PWD one or two stages; often this is temporary but not always. If she had a trauma or surgery that can also set a PWD back. Anesthesia is very hard on an already diseased brain. Even just being the hospital can trigger hospital delirium which usually improves on discharge but not always to the previous baseline.

3 things we are struggling with so any advice is welcome as this is all new to us:

1. We are at a loss at the swiftness of the decline over the last two weeks. Is the normal?

Do any of the conditions I mentioned apply? If so, this would be "normal" under those circumstances but you would expect some improvement by now if she's home. If she went to a SNF for rehab after, she's likely more confused and it would take longer to improve.

2. We have sought to find someone to speak with in person to ask and answer questions. Both the PCP and the neurologist point us towards the other. So this is how I came to be on this site. I was surprised at the lack of support in guidance, staging and expectations from the medical side for us. Even suggestions on where to go to find it. Is this normal?

I wouldn't say "normal". Normal is a dryer setting. It is typical. IME, neurology is where you go for a complete evaluation, so you know what kind of dementia mom has. A good neurologist might help with medication to improve function or even address behaviors. A PCP is kept on for general medical care and oversight. If she is struggling emotionally or you're dealing with anxiety driven behaviors, a geriatric psychiatrist is the best option for managing psychoactive medications.

IME, physicians will be reluctant to answer the hard questions with a PWD listening. You may do better to communicate your questions on a patient portal. Specific to staging, whoever lives with/near mom as caregiver would be the person who can answer where she is in the progression of the disease. Most folks here use a 7-stage model where most neurologists use 3-stages.

3. She will no longer be able to live by herself and we do not know the impact if we mover her either out of state with her daughter or here in the same town with us. Will that transition cause another steep decline? Is is better for us to take care of her in her home?

A lot of people report a permanent decline in function when moving a PWD to a new place. Sometimes a PWD who has been living alone and struggling improves when they move into a MCF with a healthy diet and social engagement. I saw this with my aunt. My dad stayed about the same. I did not see this moving my dad and we moved him more than I would have liked-- from his house in FL in July, from his place in MD to the hospital in August, to rehab in September, into an apartment near me in October and into a house near me in February where he lived for a year before we transitioned to MC.

Deciding where and how to deliver care is a personal decision. Do you have enough invested family to pull it off? Does she have a LTC policy? Can she afford to hire HHAs (over $30/hour here)? Many families opt to sell the parents' home and move them in with them or to a MCF near where they live.

Any offering of advice is greatly appreciated. We are heartbroken and feel like a canoe without an oar.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB