Loving, middle-aged couples who have been married for a long time tend to like the finer things in life. If you have been lucky enough to get to a point in your life where you don’t have to live on Ramen Noodles or biscuits and gravy, (unless you want to) your vacation choices will probably include 4 or 5-star hotels, Sunday brunches and traveling to exotic destinations. Your appreciation for spending time together while someone else waits upon you has probably grown immensely by this point.
Sadly, if you decide to choose to place your loved one outside of your home due to FTD, it is probably wiser to abandon these tastes and change your perception of what actually goes on in these places. You may decide to take care of them at home. This will entail you giving up your sole source of income and relying on the State or your savings to provide for you. Or having someone come into your home to care of your husband/wife etc. This is much more difficult than it sounds. Financially and emotionally, caring for someone with dementia is extremely wearing on the body and spirit (yours). Either decision is terrible. Neither decision feels right. But you know it what you have to do. You know that you cannot go on forever without some kind of help.
Just making the decision to either get someone in at home to help you, or send the person with FTD to Adult Day Care and then some kind of residential care arouses feelings of guilt, shame and fear. Terrible decisions that no-one should have to make. But we do. We have to. For our own sanity and safety often we have to.
Should you decide to place your darling into a residential facility, you will find that like hotels, there are vast disparities and levels of “luxury” (as they describe their environments). Help at home can often be wildly varied too. Although most home caregivers are well-meaning and kind, they are often unreliable. This means that you will have to have an extremely sympathetic employer to help you cope with those times that your “Nanny” lets you down. Just like Day Care or in-home care for your child, the standards vary vastly from one to another.
I used Adult Day Care, in-home care and three different residential facilities for my husband. This was over a period of one year. It was a roller-coaster time. Emotionally, financially and physically. So, here are the top five things you need to know about placing your loved one into some kind of institution (yes, I hate that word too but there it is)
1. Lovely chandeliers and carpets don’t matter. Manicured gardens and chef-prepared lunches don’t matter. A fabulous ‘Activities’ calendar doesn’t matter. People matter. People who care matter. There are people who care. They are the ones you want. You will know when you meet them. Trust your instincts. Take someone you trust with you who can be more objective and less emotional.
2. Many places just want your money – they can smell your desperation. They know that you are at a breaking point and are emotionally incapable of many things. Usually by the time you make the decision to place your loved one into the care of these people, you have already been to hell and back and don’t really want to go there again. They don’t care about that. They don’t care that you are waiting for someone to die. Someone you love and trusted and who is changed beyond all recognition. They don’t care that your life is in smithereens. They just want to keep their business running. They will agree to take everyone and then call you in the middle of the night to say they don’t want them anymore.
3. Not all places are like the ones described in point 2. There are some really, really great places who will care for your husband/wife/mother/father/sister/brother/friend even better than you could have. You just have to find them. I found two. They both had wonderful people who cared. Talk to people. Just don’t be swayed by “Swag”.
4. Don’t be upset when you find your husband wearing someone else’s underwear, slippers or glasses. They don’t care. All ‘ownership’ is gone. They no longer have a sense of pride.
The staff try their best to keep track of things, but residents have a way of finding others’ belongings and putting them on or hiding them away. Ask yourself “Is it that important?” Or is it more important that he/she is at least wearing clothing? (This last point comes up more often than you’d think). Accept that your beloved will now probably behave like your five-year old used to. Sad but true.
5. You can enjoy time with your loved one while someone else does the hard work. Doing the hard work is noble and commendable if you can stick it. But don’t beat yourself up if you can’t. Caring for someone with FTD or any other kind of dementia can be physically draining (and often dangerous too). Let someone else clean up the poo and feed your love whatever they will eat. Then you can spend precious time with them; time that is slowly ticking away.
Time to laugh, love and remember. Precious time.