Category Archives: Support for Caregivers

Posts mention resources and suggestions that can help caregivers stay healthy.

Social Security and Dementia

This week’s report on the shrinking Social Security Trust Fund raises pressing questions for families involved with dementia care. Social security is a life raft for many who live with the disease long after retirement. It’s a resource families need to cover costs like testing, medication, companion care, and, often, nursing homes. How could we navigate without it?

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Economists say the Social Security Trust Fund will be solvent until 2033, but that’s only two decades away. Some cases of dementia can last over twenty years. By the year 2030 about 51 million individuals will be 65 and older and statistics show that nearly twenty of every one hundred people who reach age 85 will develop some form of dementia We are racing toward a perfect storm for  bankrupting U.S. families.

Money management always seems more stressful to me than providing care. But I now believe that careful, long-term financial planning is one of the most important actions a family can take.  It’s essential to take steps to protect the assets you have and learn as much as you can about the true costs of care. If you are looking after someone with dementia, you should also consider buying yourself a long-term care policy.

My own morbid example illustrates the problem. If I were to get dementia at the same age my mom did, I’d only have 14 good earning years ahead of me. That would bring me to Year 2027. If our political leaders keep failing to make the changes needed for long term solvency of Social Security, I’d get only 6 years of benefits to help me cover costs for a disease that would likely last at least 7 years. Since I’m self-employed, I won’t have a pension. So my retirement contributions should be at least three times as high as my Mom’s were to cover the difference.

Add to this scenario, the vast number of families who did not foresee the long term costs of dementia. Many must spend all of their parents’ assets on care and will inherit nothing. When families can no longer transfer any wealth from one generation to the next, the middle class will shrink even more.

If your day is already filled with the endless tasks of caregiving, I don’t want to compound your weariness. But financial planning deserves your attention. Talk to families who’ve been through this process. They can explain how setting up a trust, transferring property, or buying a long-term care plan could save you from economic disaster. A financial professional who understands dementia care costs can also help. But check every aspect of their recommendations before you commit to buying items like an annuity or a long term care policy. Every financial product is different, and they are NOT all good. To reduce risk, look for advisers endorsed by AARP or the Alzheimer’s Association. Relying on Social Security to be there for the long haul is high risk bet. That will only happen if our elected officials are brave — and I’d never bet on that.

Care for the Overwhelmed

Last week I couldn’t write because I was on call for Mom’s six-month appointment with her Philadelphia dementia specialist. While on cross-county chauffeur duty, I received the message below from a distraught caregiver signed OMG 5230. Readers: if you have suggestions, please chime in:

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I am not fascile with blogging. I have never done it and I’m not even sure who sees this. Anyway, I am dealing very poorly with my husband’s Alzheimer’s. This has been going on for 4-5 years. He is on the regular meds, has had every other thing I have ever heard of which could help, which I might add, DID NOT. I am so filled with anger, sadness, frustration, resentment, etc. Now all that said, we still do enjoy lots of activities, though someone is with him 5 mornings a week, so I can get some free time. He is 100% physically healthy and still enjoys walks, tennis, swimming, all kinds of physical activities, which is a blessing. While he still remains adept at these activities, he is losing language and this is what I have noticed more than anything else in recent months. At times he doesn’t know what the word “television” is. I will tell him “in the television room” and he doesn’t know what I’m talking about. He looks amazing. Looks 15-20 years younger than his actual age of 75. His family is riddled with this heinous disease. I have literally no family support as his family is scattered. His children, one who lives far and the other who lives close, thinks seeing him 1x/week is sufficient. For me, it doesn’t matter, but I care for my hubby because he still gets great pleasure from his kids. I am so over trying engage them. I have decided they will do what they do and I am not going after them. I have explained that it is not for me, but for them, so when things get so bad he doesn’t recognize them, they won’t feel guilty because they will have given him their all when things were still OK. My friends would do anything for me and they have been wonderful. I make sure, while my guy can still enjoy going out for dinner, concerts, etc., that we do it almost nightly. I know this won’t last forever, but for as long as it does, we will keep going. I signed up for individual therapy because I believe my hubby’s doc thought I was chasing rainbows trying to find something which might help. Truth is, I will probably continue to do so, now using coconut oil, until there is nothing or he is clearly out of it. I can’t say I’m in denial because I know all the horrors. I don’t read a lot about the disease because it makes me sick and I already know plenty about the future, since he had siblings who died of this disease. Just being in the day is enough to absorb without also reading about how terrible our future will be. He is not ready for a day program. He would bolt, without question, which would then lead to the program dismissing him. He is not “good enough” for a senior center because he cannot follow commands or simple directions, at times. So at this time, it is me keeping him occupied with myself or the fella he spends time with and whatever social activities we have. I know this all must be old hat to many of you on the site, but I just don’t know how to “GROW PATIENCE” and not HATE this illness. I have talked with others who said they are just happy to see their parent be happy and laugh and smile. I guess I’m more difficult to please or because he still does smile and laugh plenty, that is not what I yearn for. I’m not a religious person, so my faith is not helpful here. I miss my buddy, my lover (which by the way, he is still interested in, but I’m not). It is increasingly difficult for me to be intimate with someone I take care of (in many ways like a child). He just isn’t my partner any longer in an = way, which of course you all understand. I feel badly when I am not interested because he does feel rejected but I just can’t do it. Wow that’s enough for now. I’m tired just writing all this. I don’t even know how people respond to me, if they respond. I guess I just go back on the site and see if there are replies. I really don’t know. Here’s hoping. Thanks for reading. OMG

 

My comments: “Dealing very poorly” — Since you exercise, get morning care breaks, and try to enjoy the skills he still has, I think you are actually dealing better than you realize. Sounds like what hurts most is the emotional loss of quality companionship from someone you love dearly. A caregiver support group might help you with this. In many ways, the sadness during this stage was the worst I experienced. Part of your original pal is still there, making you long for the old times. Getting accustomed to a new normal is very hard. Writing helped me process some of these emotions. Grief is at the core of it all. Dealing with it directly (even on paper) might help. Grow Patience” — I was never a very patient person. I’m always trying to do more things than are humanly possible. When my mom’s skills got really bad, I would just go nuts waiting for her to sloooowly get her socks on, slooowly eat her dinner. Then I realized that she was actually teaching me something. Somewhere in that process, I became more compassionate. Not sure why or how, it just happened. I could see that I needed to shift my perception of what was going on and accept the fact that it was out of my control. You say you are not practicing a particular faith. I would recommend learning to meditate. It is not a religious practice and the medical establishment is now documenting the benefits of meditation for patients as well as caregivers. More than any other thing, this has helped me to stay in the moment with my mom and appreciate the small victories. If you want to get the most out of the time you have left, little pleasures must become your best friends. Know all the horrors — Yes, we know them. I absolutely forbid myself to dwell on them. Sounds like you still have a lot of quality moments with your sweetheart.  You must focus on that.    I wish I had more to offer, but I’m hoping readers will make good suggestions that didn’t occur to me. And I send you a sincere, virtual hug.