Introducing Myself(6)

Pet-Fl

Hello everyone,

I have been looking around for several weeks, wow is there a lot of information!

I am 65 and my nick name is Pet, the youngest of 10 girls and "Daddy's pet" years later is has been just "Pet".

My DH is 74. His name is John and he is a wonderful man. He was first diagnosed in 2015. The dementia (ALZ) was not noticeable for years, but in the past year things accelerated.

Three days ago he started hollering for his Mom insisting that she come to him, She died 7 years ago. He has been losing words for months now. He compensates with noises. He is struggling to walk, and cannot walk without a walker. He does not want to eat, when I insist that he does he eats a few bites and then is either not hungry or too tired to eat.  I feed him so I know he's gotten something in him.

Today he woke up at 430 am and didn't know where he was.  He was terrified. I did not hear him get out of bed, but he called me finally and I just kept telling him he was safe, that I loved him and that it would be ok.

 He sees what is happening to himself and knows things are terribly wrong. I feel inadequate to help.

I do have all the legal protections in place through a elder care attorney. I am so thankful I did not wait any longer!

Cynbar

Welcome Pet. What a cute nickname! It must have been a lively household, growing up with 9 sisters. Chaotic but fun at the same time.

It does sound like your DH is fairly far along on the dementia journey. As a caregiver, it can be scary and upsetting to see the symptoms escalate and realize that he is slipping away. Have you considered asking for a hospice referral? You can call a local hospice yourself and ask for an evaluation (they will contact his doctor) or you can ask his doctor's office to do it. Hospice gets a bad name for some people as being for the last days of life but it isn't that anymore. Some patients stay on hospice for a couple of years, it's for the last chapter when no more treatments or hospitalizations are wanted or needed. Hospice would give you a lot of support in managing his symptoms and understanding the process, as well as practical supports such as nursing and home health aide visits, medical equipment , medications, social worker and chaplain as needed, and so on. You may want to consider it, requesting an evaluation doesn't commit you to anything but you may find it a great help. Good luck.

Wilted Daughter

Welcome Pet-FI and I hope you find all the help you need to successfully navigate through this journey. Both ALZ.org and Trualta.com have been essential resources to me for gaining insight and knowledge. 

Good feedback/helpful information Cynbar.

Best Wishes

Mint

Welcome to the forum Pet

dayn2nite2

He was diagnosed some time ago.  When was the last time he saw a doctor?  Is he prone to urinary tract infections?

If that is ruled out, I will let you know that in my time on this board, many people are diagnosed in mid-stage and then live another 6-8 years from then.  So we are 6 years from diagnosis.

Since he is unable to walk without a walker and not really eating unless cajoled, have you had him assessed by hospice?  Dementia has its progression and there is nothing you really can do but comfort him as you have been doing.

I would look at contacting hospices in your area for an evaluation to get an idea if he already qualifies or not.  That will at least get you some equipment assistance (hospital bed, wheelchair, bath aide), because even if he's still walking now he will probably stop walking fairly soon.