FTD with hypertension and difficulty swallowing

Northeaster

After 10 months of chasing medical testing, my husband had a PET scan last week and was diagnosed with frontotemporal dementia (FTD). He's just 68 yrs old, and is already almost mute. Since the onset of his dementia symptoms, he's had diastolic hypertension. He's never had high blood pressure in the past (runs 3 miles a day and is in excellent physical shape) so this seems to be new with the dementia. Has anyone ever heard of a link between dementia and high blood pressure? His doctor said that it's most likely a coincidence however, I'm not so sure, given the timing and the difficulty of getting it under control for the past 6 months. He's on memantine, mirtazapan and Vit B12. (Added lisinopril 40 mg however, BP today was 154/106, as it's erratic.)

Also, for the past two months, he's developed difficulty swallowing. He had a swallowing eval and is scheduled for a modified barium swallow in two weeks. I've been adding a thickener to his water since that seems to be the biggest challenge for him. The coughing after drinking/eating seems to be getting worse each week. This is very unsettling, and my daughter and I sit at the dinner table as he coughs (or spews liquid out of his mouth to protect his airway), just praying that this won't be the night that he aspirates or chokes! (She and I are both nurses and are feeling helpless.) My biggest worry is that the muscle weakness will continue. I've read that sometimes FTD can co-existence or progress to ALS. I'm praying that this is not the direction he is going, and am very unsettled by the swallowing issues so early. It hasn't even been a year since the observable onset of symptoms. He's lost strength (i.e. his golf swing isn't as strong as it was two months ago, and he has started asking me to slow down during our daily walks. No stumbling or falling). Does anyone have any thoughts or experience with this? Thanks for listening.

I've found the discussions lately very helpful. Many are expressing the same "human feelings" that I'm having. The supportive comments from members are encouraging.

Marta

FTD affects areas of the brain that are involved with autonomic regulation of the cardiovascular system, so the answer to your question regarding a potential link between FTD and new onset hypertension is likely yes. BP is not as yet under control. Know that it takes an average of three meds to get a typical case of hypertension under control. However, in your husband in whom FTD may be the cause of his hypertension, control can be more challenging, as it may be the central regulator of BP that is damaged. 

Muscle weakness is a feature of FTD, with or without the coexistence of ALS. The dysphagia , as you state, is very worrisome. I hope that your husband has advance directives in place, as the question of alternate feeding measures may soon present itself.  

I’m so sorry about what is happening in your family. My LO was symptomatic before the age of 60, much too young, like your husband. 

Northeaster

 Hi Marta,

Thanks so much for your response. I suspected there might be a physiological link between the hypertension and the deterioration in his brain. Thanks for your thoughts. I’m sorry to learn of your husband’s path. Much too young….

Yes, we have advanced directives in place. Thankfully, we put all of the “end of life” paperwork in place when he retired a year ago. I encouraged him that completing the paperwork was part of our “retirement planning,” and am so glad we did! It would be very difficult to do that now. (I still work part-time from home teaching nursing online since I’m just 62 yrs.) While at the time he thought I was being morbid, looking back, I can now see that it was wise. Since we’d only been married to each other for just 7 years, I insisted that we each write our own obituaries and wills so that nothing important would be overlooked. Little did I think that it would be needed so soon and that a happy retirement together wouldn’t come.

I recognize that with his swallowing problems coming on so quickly and increasing so rapidly (as this entire brief journey has been), I need to be prepared that the questions of tube feedings and possibly a ventilator may be around the corner. We had talked about both of those instances and only short-term was the discussion. As I look ahead, I know that dementia and dysphasia due to progressive disease, is long-term ……yet am frighted by the thought of doing nothing while he’s still periodically lucid and is in such amazing physical shape. The challenge is that he’s still “with-it” occasionally and despite the anosognosia (not understanding that he’s sick), he has fleeting moments of understanding (yet not long enough to discuss this with him nor to be assured that I’m getting the correct response due to the expressive aphasia). When he’s coughing and “sputtering,” he knows that his airway may be compromised and the fear in his eyes haunts me. He’s started standing next to me when he’s having a hard time clearing his airway due to “pooling” of fluids, most likely because he’s scared. How do I move down this path when he’s not deteriorated yet ……however, this disease is taking us there even though we aren’t prepared. My heart is broken over the past 10 months and gripped with fear over possibly having to decide about tube feeding and ventilator while he’s still so functional. (You may have read an earlier post from me when I joined last fall, sharing that my son had passed the prior year at 33 yrs old due to bacterial pneumonia compromising his underlying cardiac abnormality  --- Hypoplasic Left Heart Syndrome.) At least when my son passed, his 02 saturation was 65% and he wasn’t “really there” so making the decision to let him go was kind.

Well, I’ve rambled on. Thanks for listening and for the support. I hate this disease as my mom died of Alzheimer’s, as did my grandmother, my aunt, and now it appears that brain disease is going to take my husband too. So sad. Aggressive research is needed to put a stop to this.

Lills

My DH died of FTD and ALS almost one year ago.  He and his three siblings who had this gene (C9orf72) all died within two years of each other.  His FTD began when he was about 60; he died at age 71.  

Yes, the FTD most certainly affects muscles.  DH used to walk 5 miles a day.  Slowly, I noticed his legs started to "quiver".  

He needed to begin eating a soft diet the last 9 (?) months of his life.  I also purchased pre-thickened liquids which really helped!  They were a bit pricey but worth every dime.

 https://www.hormelhealthlabs.com/products/type/thickened-beverages/?filter_product_condition=dysphagia-swallowing-difficulties&query_type_product_conditionr

Re:  Feeding tube.  My DH and I had many end of life conversations during our 46-year marriage.  I knew without a doubt that he would not want a feeding tube.  Please don't feel I'm judging you or even trying to persuade you not to have this done for your DH.  That's a difficult choice for a spouse to have to make.  Both of the choices are difficult.  I knew he could have aspirated and yes, I was terrified of this, but another reason I declined a feeding tube was that FTD is terminal; I knew he would never get better.  If I thought the feeding tube would have been temporary, I would have jumped at this choice.  And...once a feeding was in, how would I ever decide when to have it removed?  I was just uber-careful as to what he ate and drank.  Even then, there was no guarantee that wouldn't have happened.  Good  luck; my heart aches for you.  I understand.  

Marta

Northeaster:  my heart hurts for you over your husband and son. I can never imagine (I have four sons in their 30’s). 

I was also a teacher of nursing. Now I am an ARNP working in an adult family home started by my family, caring for dementia residents. 

I would like to recommend a book to you:  Being Mortal by Atul Gawande. Many people have found this helpful when making end of life decisions. 

Northeaster

 Thanks ladies.

Lillis: I appreciate the link to other options for thickened drinks. He’s started to avoid drinking and that’s a slippery slope. Thanks also for sharing your experience with FTD and ALS. I’m sorry that you have gone through this, and find comfort in your comments. The most powerful words in your post to me were, “I understand”. I’m so sorry that you do, yet appreciate that I’m not alone and that someone else truly understands. Thank you. I’ll be sure to mention the possibility of a genetic link to my husband’s grown children so they are aware.

Marta: thanks for sharing the article by Atul Gawande. I haven’t read the book you suggested, so I ordered it. I’ve read some of his work in the past, and it’s always a helpful reminder that the goal is not survival but rather well-being. I recall doing end-of-life care for my mom (who lived in my home for 2 years with AD before she passed in my home). A dear friend of mine, and hospice nurse, gently reminded me that I’m no longer the critical care nurse trying to save her but rather, now is the time for a kind, painless, and respectful passing. I needed to shift my thinking then, as I apparently need to do now. It’s just so tough since it came on so quickly! I guess I am trying to “gear myself up” for the decision that I’ll most likely have to make. Possibly if I can work it through now, I can make the tough choice despite being emotionally charged in that critical moment.  

Thanks again for letting me vent and for taking the time to offer information and words of comfort. It’s appreciated. 

Jo C.

Hello Northeaster, I too am an RN now retired.  I was Adminstrator of multiple departments in various acute med centers  following my hands-on clinical years.   I am heartfelt sorry for what is happening. You are a brave and stalwart warrior on behalf of your beloved husband, he is blessed to have you and your daughter by his side as his carers and advocates. My mother had a behavioral variant of FTD.  You have received some excellent input; the book Marta recommends is one that many members here have stated has been helpful; Marta is amazingly knowledgeable.

You may already know, but the Association for FrontoTemporal Dementia, (aftd), has much information, (one has to do a little sleuthing at the site), and they also appear to have FTD support groups.   I am including a few links but if you go to the site you can find areas best suited for information and FTD support.  They have group online support that is rather private and protective of the Members.  If you have not done so already, it may be worth taking a look.

https://www.ftdsupportforum.com/

https://www.theaftd.org/living-with-ftd/aftd-support-groups/

https://www.theaftd.org/living-with-ftd/coordinating-care/

The thickening of liquids with Thick-it was not always accepted by my Loved One (LO), but for some reason, the pre-made drinks seemed to be tolerated better.

My LO eventually needed placement due to significant 24 hour needs.  I liked the softened foods the facility had and that the items were formed to look like the "real thing."  I think it made a difference.  Food of any kind though was something of a challenge and had to be managed carefully for all the dynamics you state and eventually became something that no longer was an option due to choking and aspiration.  Heartbreaking. 

We decided against ventilators as her advance directives stated no vents, but comfort care instead.  As difficult as it was, we decided against feeding tubes as that too was something she had discussed she did not wish to have; however, your husband is younger and in excellent physical condition, so I understand your wanting to move slowly and cautiously.  Comfort became our mission.

Let us know how you are and how things are going, we will be thinking of you,

J.

Northeaster

Thanks, Jo C. I agree that Marta is very knowledgeable. I appreciate both her's and Lills' insight!

I'll check out the pre-made thickeners and FTD sites. I had looked briefly and didn't find the ftd site very intuitive. I'll go back and search around more now that there's a diagnosis.

Sending my very best to you ladies for responding to my post when I was feeling so very alone.

ImMaggieMae

Northeaster, you mentioned your husband is taking Lisinopril for high blood pressure. This may not have anything to do with the cough, but did you know that a dry cough is a fairly common side effect of Ace Inhibitors like Lisinopril? I know this because I took it for a few years,and usually had a lot of coughing and hoarseness, especially in the morning when I was taking it. Nobody ever told me that this could be a side effect and it was a Google search about coughing that tipped me off. (Do a search for Lisinopril and cough). As soon as I mentioned it to my doctor, he switched me to a different BP med and the coughing stopped. 

This may not have anything to do with your husband’s coughing and swallowing, but why take a chance? There are a lot of other BP meds out there that don’t have this effect.

Michael Ellenbogen

If this was me make me comfortable  and let me go  Please.  I live with ftd.