DH has FTD. Just found out how this can progress. Family isn't listening, can’t seem to understand that he is not the only one on this path.
Husband recently had 10 days in respite. He suffers from FTD with Parkinson like characteristics and anxiety. He is classified as Younger Onset Dementia because he is only 63. When he came home I realised just how bad he is getting. Stumbling, poor vision, couple falls (two serious) wanders and now cannot chew his food and has trouble swallowing. I called care facility to make an appointment to speak with director about future permanent placement. He asked me if anyone had talked to me about how FTD can sometimes turn out for sufferers. I said no and he began to explain how as the brain continues to shrink people can become very difficult to manage and even violent and should this happen they would have to move him into a specialist ward of which there are only two anywhere near us.
Having read posts on this site I know that if DH is already in permanent care it is the facilities responsibility to place him in new facility. I am now concerned that if I don’t already have DH “in the system “ and things go bad I will have next to no chance of finding a good placement for him because he is under 65 and he would most likely end up in some terrible public psychiatric ward.
I am tired of hearing family members say to me how awful and sad it is for DH to have worked so hard for the last 41 years and saved and planned hard for retirement and now he will never get to enjoy it. All true. However there was another person every step of the way whose retirement and savings has gone down the drain as well. Me. The last five years of my life has been hell, But nobody seems to see that. My BIL rang two days ago and said you are his wife you should be looking after him. No one else. Mil wants me to try harder to get better doctors and try new methods. Why haven’t I tried pot? Son says today why did Dad sound good a couple of days ago but terrible today? All of them live in other states and have not actually visited. MIL says she can’t even look at him as it will be too upsetting for her even though she knows how much it means to him to see her even if only by video link. Thankfully he has stopped asking about her. Not once has anyone asked how am I coping. Not one of them trust me and think I am scheming to be rid of him. Try harder. Do more. My brother came from England for a week to see DH and helped me with getting him into respite. Completely understands. Understands my feelings and worries how I will cope.
I wonder what the attitude would be like if it was the other way around?
Mmost of us caregivers have found that there are always "helpful" folks who want to give advice without having a clue what you're dealing with. Alone
It's the reason in person caregiver groups can be a powerful help. Of course you need to find someone to sit with him!
I think I'd smile gently at the folks who think you should be trying harder and say "anytime you'd care to come over and stay for a day so I can do some research, I'd be happy to oblige you".
I'd also pound some pillows. Keep posting here; you are so wise to get your ducks in a row by talking to the facility director and other experts about what to expect.
Have you consulted an eldercare attorney yet?
YOU have fortified yourself with useful knowledge about FTD.
As you know only too well, you will never be able to educate whether unwilling or unable family members to learn what they need to understand your husbands circumstances, much less understand yours.
You have confronted your husband’s painful loss and are moving forward to ensure that he will be compassionately cared for as his condition deteriorates.
You have taken this on without the benefit of the support and consolation of other members of his family, who undoubtedly love their relative, but have failed to familiarize themselves with his situation.
Would it be easier on you to adopt a “thanks for your suggestion, I’ll file it for future reference” stance, and ignore them?
If you’re not comfortable with that, can you daydream your own bland, noncommittal response for the inevitable useless offer of their “help”?
You are doing all the right things concerning your husband’s care. Don’t hesitate, right now, today, start listing things you can do that will help you start to make your life better. It’s OK to put TURN OFF THE PHONE at the top of that list.
For the family idiots who offer unsolicited advice for something they know nothing of, mail or email them info on FTD and let them read up on it. You don’t need their approval to do what needs doing. And when they offer said advice tell them "thanks, I’ll be sure and put that in the circular file (meaning trash can)”!
People and family in particular really can astound us when going through this. Find a support group or good therapist who will listen and be there for you as they sure aren’t supportive. People who have been through it are the ones who understand. Hugs and good luck. Post anytime!
When they call to relay all of their wisdom, be prepared with what to say --
To BIL: I may be the wife, but you are the brother - connected to him by blood and known him longer than I have. As a brother, I would like to know if you (and siblings) can help me because I can no longer do this 24/7 alone. The doctor has told me it will only get worse. When can you (and siblings) come to help and would you figure out a schedule for when you can help. If you would call me back by the end of the week with a plan, I would appreciate it. (Give a deadline!!) Gotta go, I need to help your brother.
To son: This is your father. He needs your help and so do I. Perhaps if you spent a week or two helping US you would see how deteriorating this disease is. Maybe spending time with him will help you understand the situation and possibly offer me some suggestions on more efficient ways to do thing. Of course, it is going to get worse so I need commitment on a calendar of when you can come. You may want to talk with your uncle and grandmother to coordinate a plan. I need to know what the plan is by the end of the week. I am begging you for help. Gotta go, caretakers don't get phone breaks.
To MIL: This is your son and there are still days that he remembers you and wants to see you so badly. If you would like to talk to doctors in your area about other treatment options, I would welcome anything that might help. For now, I have to follow the advice of the doctors we are using. I could certainly use your help at this time in YOUR son's life and he really does want to see you. I understand it is difficult to see him like this - I wish this was not something I had to watch either, but it is OUR reality. I do need help desperately - gotta go, your son needs my help right now.
By the end of the week (and you don't get a plan from any of them), just repeat these words ANY TIME the conversation goes to what you need to do, repeat these words: He who sweeps the floor get to select the broom. I have to go now because I do not get phone breaks. And hang up. Do not engage with any of them about what you need to do. They have as much responsibility as you do.
However hard it might be, you will have to learn to tune them out. You can only change yourself/your reaction to situations, you won't be able to change them. IF at all possible, get your hands on pamphlets about FTD (I have seen several in mom's MC place with this - so sad to see once vibrant people reduced to this!) This is for you (even though you've been given the initial "tour) BUT get extra copies for the family members and hand them out/mail them. If you are told you need to try harder or do more, tell them to come stay with you/him and show you how it is done. They really do need to experience it first hand - pictures may paint a thousand words, but seeing is believing!!!
People who haven't been exposed to this (and other forms of dementia) are CLUELESS. There are some on here who chide us for putting LOs in a place, especially when it is a mother - oh, she cared for you, yadda yadda... It is NOT the same!!! I suspect those who sing this tune care for a parent with age issues, but NOT a form of dementia. Your brother has now experienced it some, so he understands. The others? Not so much.
Once I realized mom was exhibiting memory issues, I started looking up information on dementia. Brothers did not. Younger brother was even insistent on making her move to AL not MC (she won't want to be in with a bunch of old farts - huh? Clearly NO form of dementia cares what age you are. There are several in mom's place who are younger than me!!! BTW, mom is almost 96, going on 3.) Older brother isn't much better. Uninformed = ignorant.
So, provide them with the information (obviously you can't make them read it, accept it or understand it.) If they choose to keep their head in the sand, tune them out, don't take their calls, yes them to death, but do what is RIGHT for YOU and YOUR HUSBAND. Take time for yourself. Find time for outlets. Visit here often, to vent or share! Take care of yourself so you can care (remotely) for DH.
My wife suddenly became a mean 5 year old in 2006.
In 2013, she lost all social awareness, forgot herself, forgot the family, forgot me, became aggressive. She would wander aimlessly, whimpering, whining, growling, barking.
She is now an autistic 2 year old diagnosed with late stage bvFTD and other variants.
She is hyperactive, but her brain does not direct. She forgot early learned motor skills, will bump into walls and fall over objects. She lost language skills and does not comprehend.She wanders without purpose and is enraged by restraint. Sitting has to be her idea. She can not grasp objects with purpose. We hand feed her continuously all day and hydrate her with a turkey baster. A person has to be within reach of her every moment 24/7. She sleeps intermittently at night and I have to be able to awaken at her movements.
She has seizures that make her think she is being attacked. There is no medication for FTD, no medication for seizures except cannabis.
We have discovered that the cannabis makes her an absolute sweetheart for several hours, and she becomes aware, often a hoot.
It took a couple years to dial in the type and dose and delivery method, but we have it, now.
We now absolutely adore this once hellish person and enjoy caring for her.
We thank God for the plant.