Our Family is Not Sure What the Next Step Is

MarisaBeis

My mom was diagnosed with Early Onset Alzheimers in August 2020. She is currently 56 years old. It has been less than two years since her diagnosis, and the disease has progressed very rapidly. Suddenly within the last week she has been very lost and has begun having problems swallowing. She shakes and gags and is unable to swallow water, so it is hard to give her her medications. Not being able to swallow gives her panic attacks. 

My family knows that these are symptoms that show in the later stages and our mom has an upcoming doctors appointment in May, but cannot fit my mom in any sooner. My family is concerned about are not sure what next steps to take. My mom still knows who all of us are and right now she lives at home with my father. I am home with mom most days during the day, but at night she is alone with my dad and her symptoms appear worse. 

We know that we should be looking into in home care or a long term facility, but we realize that the cost of these services are very expensive. Are there any programs that offer help financially or how did you go about providing these services for your loved one? 

Any information or websites would be greatly appreciated. Just need some guidance from those who have experienced the same thing. 

MN Chickadee

Because the swallowing issue came on so suddenly if it were me I would do a UTI check. Sometimes UTIs can cause some really strange problems in people with dementia and thier abilities, so I always recommend it for any changes that are sudden. Perhaps the doctor's office lab may be able to get this done for you immediately even though the doctor can't see her for a few weeks?

She may need a swallow evaluation by a speech therapist. They assess the swallowing mechanism and make recommendations. Does she do better with thicker things like pudding, a smoothie etc? Some meds can be crushed and sprinkled in something like pudding. There may be other ways to get the meds into her.  Call and ask the pharmacist, as not all should be crushed. 

As for paying for long term care, an attorney who practices in elder law should be consulted. They can look at your parents' financial particulars and advise the best way to pay for long term care while protecting the spouse at home as best as possible. Once people spend down assets Medicaid will pay for long term care (or sometimes some care in the home,) but this varies by state and there are a lot of details to know about when there is a spouse. An attorney is the best option to make sure you are both doing everything right for the Medicaid trajectory and also getting what you are entitled to. 

If she is truly at the end stages and the swallowing issue persists, you might want to have her evaluated for hospice. They provide services wherever the person lives, whether home or a facility. It's an added layer of service and support for her and the rest of the family. They are separate from the doctor or anything else. Most will come out immediately to evaluate a person. 

towhee

Any sudden change warrants a consult with the doctor. It is not just a UTI that can cause sudden changes, and I would be worried about her getting aspiration pneumonia from the choking. Call the doctor and tell them specifically what is going on. Either they will find a way to see you or they will send you to urgent care. Is your father the one with her health care power of attorney, or who in your family goes with her to the doctor? Sometimes older people will take no for an answer too easily, or the doctor might not be getting complete information. Like Chickadee says she at least needs a swallow evaluation, and the doctor might be able to order that without seeing her. If her swallowing is as bad as you say, and no improvement can be made, it might be time to consider hospice.

harshedbuzz

MarisaBeis wrote:

My mom was diagnosed with Early Onset Alzheimers in August 2020. She is currently 56 years old. It has been less than two years since her diagnosis, and the disease has progressed very rapidly.

Hi Marisa and welcome to the best place you never wanted to be. I am sorry for your need to be here but glad you found us.

Suddenly within the last week she has been very lost and has begun having problems swallowing. She shakes and gags and is unable to swallow water, so it is hard to give her her medications. Not being able to swallow gives her panic attacks. 

Unfortunately, EO often progresses at more rapid rate than when an elderly person is diagnosed.

My family knows that these are symptoms that show in the later stages and our mom has an upcoming doctors appointment in May, but cannot fit my mom in any sooner.

This is a medical emergency. I would attempt to get her in to see her PCP today. Urgent care might be another option. It's always a good idea to rule out a UTI with any rapid onset change in abilities or behaviors. A swallowing test should be ordered asap and a chest X-ray to make sure she hasn't developed pneumonia already. Swallowing difficulty can seem to come of quickly; usually thin liquids are the first texture to give problems when the epiglottis becomes sluggish and doesn't react in time to keep food/liquids/saliva out of the airway. Sometimes aspiration is "silent" and you might not recognize it until the person is already in trouble. 

Assuming this is disease progression, it's probably time to revisit the medications she is taking and move towards a more palliative approach. Not long before my dad developed swallowing issues, we had worked with his doctor to streamline his medications eliminating those that were unnecessary or that had side effects-- we kept only those meds that treated his mood, his breathing and kept his prostate cancer out of his bones. You can also look at which meds can be crushed and given in pudding or ice cream. 

My family is concerned about are not sure what next steps to take. My mom still knows who all of us are and right now she lives at home with my father. I am home with mom most days during the day, but at night she is alone with my dad and her symptoms appear worse. 

We know that we should be looking into in home care or a long term facility, but we realize that the cost of these services are very expensive. Are there any programs that offer help financially or how did you go about providing these services for your loved one? 

If your dad has not seen a certified elder law attorney, he needs to do this soon. Aside from having POAs and such, a CELA can help make a plan to qualify your mom for Medicaid to help pay for care if they don't have the assets to do this. 

Hospice could also be called in if she meets their criteria. This isn't wall-to-wall care, but she'd get a bath aide 2-3 times a week, supplies to make care easier, a visiting nurse and support for the family. 

Any information or websites would be greatly appreciated. Just need some guidance from those who have experienced the same thing. 

National Elder Law Foundation (nelf.org)

May flowers

I don’t have a lot to add, except to agree that it’s always a good idea to look into causes when something comes up quickly. My FIL started having swallowing issues last month and coughing constantly. A hospice nurse gave an informal test and said he was drinking too quickly and too big of sips. We started him on thick it for his drinks, but didn’t really notice a difference.

At the same time the swallowing issues started he started snoring (apnea-like), having reflux issues and being restless. After raising the head of his bed and giving him Pepcid ac helped, we thought it could be the liquid stool softener he was taking irritating his throat and causing reflux. The doctor prescribed protonix which helped. When we stopped the stool softener, the coughing stopped and the reflux and snoring resolved completely. (The only reason I thought to ask about it is I had apnea years ago caused by reflux). 

He still has some issues with eating too fast and gulping his drink, but we still use thick it, and encourage slower sips. We have to make sure he’s sitting upright - he tends to slide down constantly and that causes problems eating.